[Senate Hearing 110-316]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 110-316
 
THE JUVENILE DIABETES RESEARCH FOUNDATION AND THE FEDERAL GOVERNMENT: A 
  MODEL PUBLIC-PRIVATE PARTNERSHIP ACCELERATING RESEARCH TOWARD A CURE 

=======================================================================

                                HEARING

                               before the

                              COMMITTEE ON
               HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS
                          UNITED STATES SENATE

                       ONE HUNDRED TENTH CONGRESS

                             FIRST SESSION

                               __________

                             JUNE 19, 2007

                               __________

        Available via http://www.access.gpo.gov/congress/senate

                       Printed for the use of the
        Committee on Homeland Security and Governmental Affairs

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36-614 PDF                 WASHINGTON DC:  2008
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        COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS

               JOSEPH I. LIEBERMAN, Connecticut, Chairman
CARL LEVIN, Michigan                 SUSAN M. COLLINS, Maine
DANIEL K. AKAKA, Hawaii              TED STEVENS, Alaska
THOMAS R. CARPER, Delaware           GEORGE V. VOINOVICH, Ohio
MARK L. PRYOR, Arkansas              NORM COLEMAN, Minnesota
MARY L. LANDRIEU, Louisiana          TOM COBURN, Oklahoma
BARACK OBAMA, Illinois               PETE V. DOMENICI, New Mexico
CLAIRE McCASKILL, Missouri           JOHN WARNER, Virginia
JON TESTER, Montana                  JOHN E. SUNUNU, New Hampshire

                  Michael L. Alexander, Staff Director
                     Aaron M. Firoved, AAAS Fellow
    Purva H. Rawal, Ph.D., Legislative Assistant, Office of Senator 
                               Lieberman
     Brandon L. Milhorn, Minority Staff Director and Chief Counsel
        Priscilla H. Hanley, Minority Professional Staff Member
                  Trina Driessnack Tyrer, Chief Clerk
















































                            C O N T E N T S

                                 ------                                
Opening statements:
                                                                   Page
    Senator Collins..............................................     2
    Senator Lieberman............................................     3
    Senator Akaka................................................     6
    Senator Tester...............................................     7
Prepared statement:
    Senator Levin................................................    15

                               WITNESSES
                         Tuesday, June 19, 2007

Mary Tyler Moore, International Chairman, Juvenile Diabetes 
  Research Foundation............................................     9
Adam Morrison, National Basketball Association Player, Charlotte 
  Bobcats........................................................    11
Griffin P. Rodgers, M.D., M.A.C.P., Director, National Institute 
  of Diabetes and Digestive and Kidney Diseases, National 
  Institutes of Health, U.S. Department of Health and Human 
  Services.......................................................    13
Caroline McEnery, Delegate, Age 17, JDRF Children's Congress, 
  Fairfield, Connecticut.........................................    18
Caitlin Crawford, Delegate, Age 13, JDRF Children's Congress, 
  Yarmouth, Maine................................................    20
Tre Hawkins, Delegate, Age 12, JDRF Children's Congress, Detroit, 
  Michigan.......................................................    22
Ann Strader, Mother of Abraham and Curtis Strader, Delegates, Age 
  6, JDRF Children's Congress, Lakeville, Minnesota..............    23

                     Alphabetical List of Witnesses

Crawford, Caitlin:
    Testimony....................................................    20
    Prepared statement...........................................    53
Hawkins, Tre:
    Testimony....................................................    22
    Prepared statement...........................................    55
McEnery, Caroline:
    Testimony....................................................    18
    Prepared statement...........................................    51
Moore, Mary Tyler:
    Testimony....................................................     9
    Prepared statement...........................................    32
Morrison, Adam:
    Testimony....................................................    11
    Prepared statement...........................................    35
Rodgers, Griffin P., M.D., M.A.C.P.:
    Testimony....................................................    13
    Prepared statement...........................................    37
Strader, Ann:
    Testimony....................................................    23
    Prepared statement...........................................    56

                                APPENDIX

Updated photo of device (pump and sensor) submitted by Medtronic, 
  Inc............................................................    29
Chart titled ``Type 1 Diabetes: A Slowly Progressive Autoimmune 
  Illness,'' submitted by Dr. Rodgers............................    30
Photo titled ``Continuous Glucose Monitoring,'' submitted by Dr. 
  Rodgers........................................................    31
Questions and responses for the Record from Dr. Rodgers..........    59


                  THE JUVENILE DIABETES RESEARCH FOUN-
                   DATION AND THE FEDERAL GOVERNMENT:
                   A MODEL PUBLIC-PRIVATE PARTNERSHIP
                  ACCELERATING RESEARCH TOWARD A CURE

                              ----------                              


                         TUESDAY, JUNE 19, 2007

                                       U.S. Senate,
                           Committee on Homeland Security  
                                  and Governmental Affairs,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 9:30 a.m., in 
room SD-106, Dirksen Senate Office Building, Hon. Joseph I. 
Lieberman, Chairman of the Committee, presiding.
    Present: Senators Lieberman, Levin, Akaka, Tester, and 
Collins.
    Chairman Lieberman. Good morning.
    Well, I must say, of all the hearings that I have had the 
honor to convene, this is the most beautiful group of people in 
front of me that I have ever seen. So welcome this morning.
    I am Senator Joe Lieberman, and it is my honor to be the 
Chairman of this Committee this year. I want to welcome our 
witnesses to this hearing of the fifth Children's Congress 
organized by the Juvenile Diabetes Research Foundation.
    Senator Susan Collins is the Ranking Member of this 
Committee. For years, she was the Chairman, and as we said, in 
the roll of the dice or the twist of fate or whatever it is, it 
turned out that I have the title of Chairman this year, but 
nothing has changed in our partnership in this Committee other 
than our titles. She is an extraordinary person, and I am 
really honored to work with her.
    Senator Collins has taken a particular interest in juvenile 
diabetes and chaired four similar hearings that have focused on 
breakthroughs in research, the partnership between the JDRF and 
the National Institutes of Health, and the challenges in 
developing effective treatments and a cure for juvenile 
diabetes.
    First off, I do want to say before I turn the gavel over to 
her that I am very sorry that she got the memo that we were 
supposed to wear yellow today. [Laughter.]
    And I didn't get it, but there is a very little bit of 
yellow in my multi-colored tie.
    Anyway, to recognize and really honor Senator Collins' 
superb and important leadership on this important public health 
challenge, I am going to turn the gavel over to her. I look 
forward to her opening statement. If she so chooses with the 
gavel in her hand, I will then make an opening statement. But 
then she will Chair the hearing. Senator Collins.

              OPENING STATEMENT OF SENATOR COLLINS

    Senator Collins. Thank you very much, Senator Lieberman. It 
is really nice to have the gavel back, even if it is just for 
this one hearing. But it is typically gracious of you that when 
I asked you if I could Chair today in view of my longstanding 
interest in this issue, you didn't hesitate. You immediately 
acceded to my request, and I am very grateful for that.
    As you mentioned, this is the fourth Juvenile Diabetes 
Research Foundation Children's Congress that I have had the 
honor to Chair, and I am very grateful for your leadership, as 
well. I know that there is a delegate from Connecticut here 
today.
    I also want to welcome all of our distinguished witnesses, 
but most of all, I want to welcome all the children who have 
joined us today.
    It is just wonderful to have you here. Now, have any of you 
been to Washington before? A few of you have--quite a few of 
you have. Well, then you know it is very unusual for us to have 
children come to our hearings, much less testify. But it is 
important that children are here from all over the country and 
indeed around the world to tell Congress just what it is like 
to have diabetes, how serious it is, and how important it is 
that we fund the research necessary to find a cure.
    I want to give a special welcome to the delegate from 
Maine, 13-year-old Caitlin Crawford, who will be testifying on 
the second panel today.
    As the founder and the Co-Chair of the Senate Diabetes 
Caucus, I have learned a lot about the disease and the 
difficulties and the heartbreak that it causes for so many 
American families as you await a cure. Diabetes is a lifelong 
condition that affects people of every age, race, and 
nationality. It is the leading cause of kidney failure, 
blindness in adults, and amputations not related to injury. 
Moreover, it is estimated that diabetes accounts for more than 
$132 billion of our Nation's annual health care costs and that 
health spending for people with diabetes is almost double what 
it would be if they did not have diabetes.
    These statistics are truly overwhelming, but what really 
motivates me to devote so much energy to this issue is meeting 
more and more people like our delegates today and their 
families whose lives have been changed forever by diabetes, and 
that is why it so important that you have all traveled here to 
tell your stories. You put human faces on all of those 
statistics. You can teach us what Congress can do to help us 
better understand and ultimately conquer this terrible disease.
    The burden of diabetes is particularly heavy for children 
and young adults with type 1, or juvenile diabetes. It is the 
second most common chronic disease affecting children. 
Moreover, it is one that you never outgrow.
    People ask me all the time why I am so interested in 
juvenile diabetes. They ask, do I have a family member who is 
afflicted with it, and I do not. What got me interested was a 
meeting that I had when I became a new Senator back in 1997 
with JDRF members in Maine. They came into my office, and I 
will never forget this 10-year-old boy who told me that all he 
wanted was to take one day off from his diabetes.
    But I realize that even if it is your birthday, or 
Christmas, or another holiday, you can't take a day off from 
diabetes, and the average child with diabetes will have to take 
more than 50,000 insulin shots in a lifetime.
    While the discovery of insulin was a landmark breakthrough 
in the treatment of diabetes, it is not a cure. Thankfully, 
there is much good news for us to report today. Since I founded 
the Senate Diabetes Caucus in 1997, funding for diabetes 
research has more than tripled, so it is now up to about $1 
billion. As a consequence, we have seen some encouraging 
breakthroughs, and we are on the threshold of a number of 
important new discoveries, as Mary Tyler Moore and I were 
discussing briefly this morning.
    For example, a new drug that has been tested in clinical 
trials has been shown to have the possibility of stabilizing or 
even reversing the progression of type 1 diabetes, 
demonstrating for the first time that the clinical course of 
the disease can be altered.
    Advances in technology, like continuous glucose sensors, 
are helping people better control their blood glucose levels, 
and that is key to preventing diabetes complications. These 
advances are also moving us closer to the long-term goal of an 
artificial pancreas, and drugs originally designed for cancer 
therapy are showing tremendous potential for treating diabetic 
eye disease.
    Now, we are making progress, but now is no time to take our 
foot off the accelerator. We basically have two choices. We can 
sit back and continue to pay the bills and endure the 
suffering, or we can aggressively pursue a national strategy 
aimed at curing this terrible disease.
    In August 2006, the National Institutes of Health released 
a report called ``Advances and Emerging Opportunities in Type 1 
Diabetes Research: A Strategic Plan.'' It charts a course that 
we must take. The Juvenile Diabetes Research Foundation has 
brought together leading researchers and economists who 
estimate just how much it would cost to fully fund the research 
opportunities identified in this landmark report. The estimate 
is that it would cost approximately $557 million in 2009, 
rising to about $1.2 billion in 2013. Clearly, we have our work 
cut out for us, but we can do it.
    The good news is that there is strong support in Congress 
for increasing funding for diabetes research, including Senator 
Lieberman's strong support. Last month, 64 senators joined me 
in sending a letter to the Senate leadership urging increased 
funding for type 1 diabetes to accelerate our race to a cure.
    And I am hopeful that this morning's hearing, plus all of 
the visits that you are doing with senators all over the Hill, 
will help to build on that support and give us the momentum we 
need for increased research funding to find better treatments, 
a means of prevention, and, yes, ultimately, a cure.
    Thank you, Mr. Chairman. I am delighted to call on you for 
your statement.

            OPENING STATEMENT OF CHAIRMAN LIEBERMAN

    Chairman Lieberman. Well, thank you, Madam Chairman, for 
that excellent statement.
    Let me welcome everyone here and particularly give a 
special welcome to Caroline McEnery from my home State of 
Connecticut, who is going to share her story with us today. 
Also, her fellow nutmeggers, which is what we call people from 
Connecticut--it is too long a story to tell. [Laughter.]
    Or maybe the more familiar today--if you follow UConn men 
or women's basketball--we say fellow Huskies Aiden Falla, 
Amanda Rossi, and Sedrick Trotman, with whom I look forward to 
meeting after this hearing.
    And let me just add an exclamation point to what Senator 
Collins has said to thank you for coming and to tell each of 
you, particularly the children here, you will be amazed at how 
important it is that you and your families have taken the time 
to be here because in your meetings with individual senators 
and members of the House of Representatives, you will educate, 
you will motivate, and you will move us to getting the things 
done that we want to get done.
    Probably you have all heard the story of the discovery of 
insulin, but there are parts of it that I love to tell, and I 
tell it because it is a hopeful story. Obviously, before that, 
diabetes really was a dreadful disease. In the winter of 1921--
that is a long time ago in a child's life, but in the span of 
history, when we think of how long people have had diabetes, it 
is fairly recent--1921, following months of experiments and 
tests, a doctor from Canada, right to the north of us, 
Frederick Banting, and a team of researchers announced that 
they had successfully lowered the blood sugar in dogs that had 
diabetes that they were experimenting with and that led to the 
new--that was their breakthrough of insulin therapy. The news 
flashed around the world, not as quickly as it does today 
through the Internet, but it went around the world, bringing 
hope to millions.
    And it is a wonderful story that in an extraordinary 
display of compassion, the Banting research team walked away 
from the fortune, the monetary fortune their discovery would 
have earned them selling the production rights to insulin for a 
mere dollar.
    The idea that led to the discovery of insulin--this will be 
an interesting little story for you and your parents, I hope--
occurred to Dr. Banting as he was getting ready for bed one 
night following a long day's work on unrelated research, 
unrelated to the problem of diabetes. Eventually, he won a 
Nobel Prize for his discovery because that night, he scribbled 
the idea that he had before he went to bed into his notebook 
which he kept by the side of his bed. So keep a notebook by the 
side of your bed, kids, for those big ideas. And later, he 
would say--this is particularly important for those of us who 
are senators to hear--no one has ever had a really great idea 
while wearing a suit. [Laughter.]
    I don't know, we may have to consider--all right.
    So obviously, since the discovery of insulin, we have made 
extraordinary progress, as Senator Collins described, in 
managing diabetes. But when it comes to children's diabetes, 
obviously, our understanding of the cause and the cure is not 
yet within our grasp, though I would say, based on the 
tremendous advance of medical science, that it is definitely 
within our reach, and Dr. Banting's late-night revelation 
should really fill us with hope that there are researchers out 
there today, tonight, who are going to have similar discoveries 
that will advance the cause.
    That is why it is so important to support the work of the 
Juvenile Diabetes Research Foundation. The numbers speak for 
themselves. I am just going to mention these numbers to talk 
about the societal significance here. Nearly 21 million 
Americans have diabetes, and about 1.5 million new cases are 
diagnosed each year. The remarkable story in response is that 
over the last three decades, JDRF has raised and provided more 
than $1 billion for juvenile diabetes research, and there is a 
great partnership between JDRF and NIH in moving this research 
forward. The bottom line here is we have come a long way, but 
we have a long way to go, and that is why your presence here 
today is so important.
    When I come to a subject like this and I think of Dr. 
Banting and all the advances in the treatment and managing of 
diabetes that Senator Collins referred to, I think of this. 
There are a lot of reasons, I suppose, people have in the world 
today for being upset or depressed, but a lot of those 
unfortunately are true, world events, I mean. But when you look 
at the incredible advances in technology and medical science 
and you think of the things that you are going to see during 
your lifetime, that I have seen in my lifetime that I never 
would have dreamed--I am still kind of amazed that I can pick 
up this little piece of plastic and send an e-mail to somebody 
halfway around the world and hear back in about four seconds, 
not to mention the extraordinary advances in treating and 
curing diseases that people never dreamed would be so well 
treated and cured.
    So let us go forward, understanding that JDRF does 
tremendous work. NIH has done tremendous work. They have been 
flat-funded lately overall, and that is not good. So a lot of 
us, Senator Collins, Senator Akaka, and I are going to be 
working to increase funding, particularly for juvenile diabetes 
research.
    I know you will inform us. I know you will leave us with 
hope, and I hope you leave here with even more hope than you 
came with.
    Thank you very much, Senator Collins.
    Senator Collins. Thank you, Senator.
    I want to thank Senator Akaka and Senator Tester for 
joining us also today.
    Leading off our first panel this morning, I am pleased to 
welcome once again Mary Tyler Moore to the Committee. She is 
very well known for her work in film and television, but she is 
well known to anyone whose life has been touched by diabetes 
for serving as the International Chairman of the Juvenile 
Diabetes Research Foundation. It has been my great pleasure to 
work very closely with her over the years. I admire her 
advocacy enormously, and we have a shared goal of finding a 
cure for this devastating disease. So Ms. Moore, it is a great 
honor to welcome you back today.
    Next, we are going to hear from Adam Morrison, an all-
American basketball player in college. Adam now plays for the 
Charlotte Bobcats and this past season finished second in 
scoring among all NBA rookies. He was diagnosed with type 1 
diabetes when he was 14, and he is going to tell us about the 
special challenges he faces as he continues managing his 
diabetes while pursuing a successful professional basketball 
career. And I know that the children here are going to be 
really interested because they are very active in sports, as 
well.
    And last but certainly not least, we will hear from Dr. 
Griffin Rodgers, who is the Director of the National Institute 
of Diabetes and Digestive and Kidney Diseases at the NIH. Dr. 
Rodgers will highlight the advances and opportunities in 
research and will provide some examples of research that is 
supported by the Special Diabetes Program, and we are pleased 
to welcome you, as well.
    It is my understanding that Senator Akaka has a brief 
opening statement that he wants to give, and I will call on 
Senator Tester, as well. Because the children are on a 
schedule, I will ask the statements to be brief. Senator Akaka.

               OPENING STATEMENT OF SENATOR AKAKA

    Senator Akaka. Thank you very much, Madam Chairman, and I 
want to add my welcome to all of you, our witnesses, the 
parents who are here, and, of course, our distinguished young 
people who are here.
    I really appreciate your coming here, and I also appreciate 
the leadership of Senator Collins, who for many years now has 
led this important effort here in the Senate.
    Diabetes is a significant health problem in my home State 
of Hawaii. Many people like to think of Hawaii as a place where 
we don't have it, but we do. An estimated 100,000 people in 
Hawaii have diabetes. Diabetes is a disease that 
disproportionately affects Native Hawaiians, Pacific Islanders, 
and Asian Americans. Native Hawaiians, Japanese, and Filipino 
adults living in Hawaii are twice as likely to be diagnosed 
with diabetes as compared to Caucasian residents.
    Diabetes is extremely difficult for patients to manage, as 
you well know. However, there are some promising research 
efforts underway, which we will learn more about today. We must 
continue to increase the funding for diabetes research to 
develop improved methods to treat, manage, and prevent 
diabetes. We must also enact meaningful stem cell legislation, 
as well, and we must allow researchers like Dr. Rodgers to be 
involved in ethical, federally funded research projects 
intended to help individuals suffering from a wide range of 
diseases, including diabetes.
    I look forward to hearing the testimony from our witnesses 
today who will share their experiences of overcoming diabetes. 
I am pleased that one of my constituents is here with us today, 
and I would like to welcome her.
    Natasha Garcia has been working with the Hawaii State 
Legislature on diabetes-related issues, and now she is here 
talking to the U.S. Senate about this disease. We are so happy 
to have you. Will you hold your hand up, Natasha? Thank you 
very much for being here.
    And also, I want to say hello to your dad, Leo Garcia, who 
is in the audience. Leo, thank you very much for being here, 
and I was going to tell you, if you don't know who he is, look 
for the ``aloha'' shirt. [Laughter.]
    The challenges faced by all of the children here remind us 
of the tremendous importance of our work here in Washington, 
DC.
    I also want to thank our witnesses, Mary Tyler Moore, and 
the Juvenile Diabetes Research Foundation for all of their 
efforts to improve the lives of so many people.
    In addition, I appreciate Adam Morrison for joining us 
today and serving as a role model for our children by 
overcoming the challenges presented by diabetes, as well as Dr. 
Rodgers. I want to wish you well in your efforts at NIH. As you 
know, we try very hard to make sure you are well funded. So 
thank you very much for being here.
    Thank you, Madam Chairman. I ask that my full statement be 
included in the record.
    [The prepared statement of Senator Akaka follows:]
                   OPENING STATEMENT OF SENATOR AKAKA
    Mr. Chairman, thank you for conducting today's hearing on juvenile 
diabetes. I also appreciate the leadership that the Ranking Member, 
Senator Collins, has shown on this important issue.
    Diabetes is a significant health problem in my home state of 
Hawaii. An estimated 100,000 people in Hawaii have diabetes. Diabetes 
is a disease that disproportionately affects Native Hawaiians, Pacific 
Islanders, and Asian Americans. Native Hawaiians, Japanese and Filipino 
adults living in Hawaii are twice as likely to be diagnosed with 
diabetes as compared to Caucasian residents.
    Diabetes is extremely difficult for patients to manage. Taking 
insulin injections and carefully monitoring blood sugar levels are not 
easy tasks for both children and adults alike. Even with careful 
management, diabetes can contribute to significant health problems, 
such as heart disease, stroke, eye disease and blindness, kidney 
disease, and medical complications.
    There are some promising research efforts underway, which we will 
learn more about today. We must continue to increase the funding for 
diabetes research to develop improved methods to treat, manage, and 
prevent diabetes. We must also enact meaningful stem cell legislation. 
We must allow researchers to be involved in ethical, federally funded 
research projects intended to help individuals suffering from a wide 
range of diseases, including diabetes.
    Unfortunately, the President is expected to again veto the stem 
cell legislation. The President's restrictions on stem cell research 
prevent federal funds from being used for research on newer, more 
promising stem cell lines. This is critical because embryonic stem cell 
lines now eligible for federal funding are not genetically diverse 
enough to realize the full therapeutic potential of this research. The 
President's stem cell policy prevents researchers from moving ahead in 
an area of research that is very promising.
    I look forward to hearing the testimony from witnesses today who 
will share their experiences of overcoming diabetes. I am pleased that 
one of my constituents is with us today. Natasha Garcia has been 
actively involved in advancing diabetes-related issues in the Hawaii 
State Legislature. I also am delighted that her father, Leonardo, is 
also here today. The challenges faced by all of the children here 
remind us of the tremendous importance of our work here in Washington.
    I also want to thank Mary Tyler Moore and the Juvenile Diabetes 
Research Foundation for all of their efforts to improve the lives of so 
many people. In addition, I appreciate Adam Morrison for joining us 
today and serving as a role model for children by overcoming the 
challenges presented by diabetes.
    Again, Mr. Chairman, thank you for conducting this important 
hearing. I look forward to continuing to work with all of you to 
improve the lives of individuals suffering from diabetes.

    Senator Collins. Without objection. Senator Tester.

              OPENING STATEMENT OF SENATOR TESTER

    Senator Tester. Thank you, Madam Chairman. I also would ask 
unanimous consent for my full statement to be put into the 
record.
    Senator Collins. Without objection
    Senator Tester. I, too, want to thank all of you for being 
here today. Especially Dr. Rodgers for your work at the 
National Institutes of Health. It is critically important we 
give you the resources necessary so you can do the kind of 
research to help a lot of folks that are in this room here 
today.
    Adam Morrison, the potential NBA star, if you are not 
already there, and a great player for Gonzaga, but few folks 
know that what really got him off on the right foot is he spent 
6 years in Glendive, Montana. We really appreciate all you have 
done to set a role model example for everybody with diabetes.
    And Mary Tyler Moore, somebody who I grew up watching on 
TV, I really appreciate all the work that you, too, have done 
for juvenile diabetes.
    And for the young people who are here sitting in front and 
out in the audience, Allison Trent from Missoula, who is one of 
the folks here, I appreciate your coming today. I think it is 
incredibly important that we, as policy makers at the Federal 
level, do things to make sure that you have the best ability to 
achieve your hopes and dreams for the future.
    Dealing with juvenile diabetes is something that a good, 
close personal friend of mine who I graduated from high school 
with was diagnosed with at the age of 12. When I talk to him, 
most of the time on a monthly basis, he is always asking me 
about how stem cell research is coming along, and I really 
think that drives it home for me that we need to take every 
avenue possible and fund every avenue possible so that our next 
generation, the reason I serve in the U.S. Senate, has the 
ability to succeed and make this country as great as it has 
been in the past.
    With that, Madam Chairman, thank you very much.
    [The prepared statement of Senator Tester follows:]
                  OPENING STATEMENT OF SENATOR TESTER
    Mr. Chairman, this is a very important hearing. I am pleased that 
Adam Morrison is here today to talk about his own experience as a 
diabetic, NBA star and most importantly a native Montanan from 
Glendive!
    As a rural state, Montana often finds itself on the fringes of 
access to information and support for numerous health care concerns, 
juvenile diabetes being one of them. I find it telling that while there 
are more than 53,000 people in Montana who have been diagnosed with 
diabetes and it is estimated that an equal number of folks across the 
state have undiagnosed diabetes, we have few statistics focused 
exclusively on juvenile diabetes. Even while we know that one out of 
every three children born since 2000 will develop diabetes during their 
lifetime, it is unclear how many of these will be diagnosed with 
juvenile diabetes.
    Type 1 or juvenile diabetes is a chronic disease that poses 
challenges for every member of the family--the young person affected 
and his or her parents as well. Thanks to new and constantly improving 
treatment options, developed by some of the organizations here today, 
children can expect to lead a full and active life, despite needing to 
receive insulin injections multiple times a day in order to remain 
healthy.
    When considering issues of access to health care in Montana, I 
always look to see how our Indian Health Service is able to serve the 
needs of the community, especially because the problem of diabetes is 
particularly acute among Native Americans.
    Therefore I am sure you can understand why I was disappointed to 
learn that the president's budget for FY 2008 would have:
    Maintained the same insufficient funding as FY 07 of $150 million 
for the Indian Health Diabetes fund, down from the $163 million granted 
in FY 06.
    And barely increased the funding for the National Institute of 
Diabetes and Digestive and Kidney Diseases, from $1.855 billion in FY 
07 to $1.858 billion for FY 08.
    As of 2002, Montana has only 14 recognized diabetes education 
programs and 60 Certified Diabetes Educators spread across our great 
State. Access to treatment, education and resources is especially 
critical in rural areas where the number of trained health 
professionals is significantly lower and spread-out than in most 
States.
    I'm looking forward to hearing about what kinds of programs will be 
developed and offered to these families as a result of this 
partnership.
    These kids and their families deserve to live full lives, so I'd 
like to know what you all are doing to follow up with folks after they 
hear about the kinds of support and treatment options that programs 
like yours open up.
    Mr. Chairman, I've taken up far too much time. I yield back.

    Senator Collins. Thank you.
    Ms. Moore, if you would proceed with your statement.

   TESTIMONY OF MARY TYLER MOORE,\1\ INTERNATIONAL CHAIRMAN, 
             JUVENILE DIABETES RESEARCH FOUNDATION

    Ms. Moore. Senator Collins, Senator Lieberman, I want to 
say good morning and thank you for the opportunity to be here 
with you today, along with these wonderful children.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Moore appears in the appendix on 
page 32.
---------------------------------------------------------------------------
    As I was preparing to come to Washington for Children's 
Congress and the hearing, I thought back to the very first 
Congress in 1999, and I will be honest with you--it was never 
my intention to appear before you 8 years later, still talking 
about the need to push forward aggressively on research toward 
a cure for type 1 diabetes.
    The good news is that we are making real progress on the 
research front. Progress resulting from the strong public-
private partnership between JDRF and the Federal Government. 
Progress that is impacting many people with diabetes in a 
positive way right now.
    The bad news is that, for me and the children in this room, 
every day living with diabetes is a day closer to the serious 
complications from this disease. For me personally, diabetes 
has taken quite a toll. As you may know, I have been battling 
the disease for almost 40 years. That is, every minute of every 
day for 40 years. That is a long time to be constantly 
counting, measuring, calculating, and hoping that all I am 
doing to stay in good control actually works, because, you see, 
keeping your blood sugar in normal range when you have diabetes 
is difficult, even for those who are most diligent. I lost 
count long ago of the number of fingerpricks and shots that I 
have self-administered, as well as the hypoglycemia episodes 
that all who suffer from diabetes fear.
    All of us know that our hope of a cure lies in medical 
research, and that is why we all work hard to raise the dollars 
to support the best science. Yet the pace of research can be 
frustrating. It takes a long time to build the knowledge base, 
test various theories in the lab, build the necessary 
infrastructure, before we even reach the point of beginning 
clinical research. But once we reach that point, testing new 
therapies in people, the research accelerates. That is when 
hope becomes tangible, not simply an idea to hold onto.
    In type 1 diabetes research, this is happening. We have 
entered a time of opportunity, when the pace of translating 
knowledge into benefits to patients will be determined by the 
strength of our public-private partnership.
    We are taking on this challenge, and we need the Federal 
Government to do the same. Next year, JDRF will fund 
approximately $170 million of research, more in a single year 
than any time in our history and nearly three times as much as 
we were funding in 1999. But more exciting than the dollar 
amount is the type of research we are funding. In the last 
fiscal year, JDRF launched eight new clinical trials, bringing 
our total of active trials to 29, compared with five at the 
start of the year 2000.
    And the Federal Government, through your leadership Senator 
Collins, has provided critical support as well through the 
Special Diabetes Program. This program was created in 1997 
because Congress recognized that funding for type 1 diabetes 
needed to be increased significantly to capitalize on the 
opportunities that existed at that time. It reflects the 
decisions of policy makers to undertake a highly targeted, 
innovative, and clinically oriented approach to research on 
type 1 diabetes and its complications.
    As a result, the funds provided through this program have 
been deployed in a different manner than usually is the case. 
By all measures, the program is working and has delivered real 
results. It is an example of how medical research should be 
funded at the Federal level.
    That is why Congress has renewed the program twice, and the 
funding has risen to the current level of $150 million per 
year. The program has become a key component in the Federal 
Government's focus on type 1 diabetes research, and it provides 
approximately 35 percent of all Federal support for type 1 
research.
    The Special Diabetes Program has primarily supported unique 
collaborative research consortia and clinical trial networks 
focused on type 1 diabetes and its complications. Without 
support by this program, these innovative and critically 
important efforts either could not have been undertaken at all 
or not funded at a significantly optimal scale of operation.
    Think about what this means in human terms. Today, there 
are approximately 60,000 people participating in clinical 
research directly supported by this program. These are people 
whose lives are being impacted in a positive way. And because 
of this investment, the research is setting the stage for 
millions of others to benefit.
    We finally reached the bedside in our push from the 
laboratory bench. We must sustain this forward momentum and not 
allow ourselves to slip back. But this critical cure-enabling 
program is now set to expire, so we are asking Congress to 
again recognize its effectiveness and importance. Extend it for 
an additional 5 years and increase the funding to $200 million 
per year.
    Let me give you some concrete examples of research progress 
made possible by this strong public-private partnership between 
JDRF and the Federal Government. A new drug has been shown in 
human clinical trials to stabilize or reverse the immune attack 
of type 1 diabetes and, for the first time, provides evidence 
that the clinical course of the disease can be altered long-
term. These trials are underway involving newly diagnosed 
children.
    Drugs originally designed for use in cancer therapy are 
being repositioned to treat people with both type 1 and type 2 
diabetes who suffer from diabetic eye disease, the leading 
cause of blindness in working-age adults. Results have been 
very promising.
    Advances in medical technology for continuous glucose 
monitoring have brought the field closer to realizing an 
artificial pancreas that could function much like a normal 
pancreas. A number of companies have continuous glucose sensors 
on the market, and people who are using them are able to 
achieve much tighter control of their blood glucose levels.
    The day we were diagnosed, we made a promise along with our 
parents, brothers, sisters, spouses, and loved ones to do 
whatever we could to help accelerate a cure. We are here today 
to advocate for ourselves and to ask you to make a promise to 
each of us, a promise to prevent a reduction of 35 percent in 
Federal support for type 1 diabetes research and to work hard 
to increase funding.
    Some of the young children I met during the first 
Children's Congress in 1999 have since gone on to college, away 
from their families and support systems, bringing their 
diabetes and the challenges that go along with it with them. 
They are actively living their lives, pursuing their dreams, 
and doing what they can every minute of every day to keep 
themselves healthy.
    When you hear from some of the child delegates in a few 
minutes, you will see that they are very brave and are facing 
their diabetes with the knowledge that they need to do whatever 
is in their power to help, and they are. As many of you know, 
we are a very determined bunch! We don't ask others to do what 
we haven't already challenged ourselves to do. We are here to 
remind you of the urgency of your efforts to increase research 
dollars and to show that we will continue to do our part to 
remain your partner. I am here to ask you to look into the eyes 
of these beautiful kids and show them through your actions that 
you care about their future.
    I thank you so much for this opportunity, but more 
importantly, I thank you for all that you have done and that 
you will continue to do to help those living with type 1 
diabetes. Together, I know we will get to our shared goal of a 
cure.
    Senator Collins. Thank you very much for your eloquent 
testimony.
    [Applause.]
    You can see why Mary Tyler Moore is such a powerful 
advocate, and I am so honored that once again she has started 
our hearing off. So thank you for being here.
    Mr. Morrison.

TESTIMONY OF ADAM MORRISON,\1\ NATIONAL BASKETBALL ASSOCIATION 
                   PLAYER, CHARLOTTE BOBCATS

    Mr. Morrison. Good morning. It is an honor to be here today 
to appear before this Committee to tell you about the ways 
juvenile diabetes has affected my life and the need to fund 
research so we can find a cure as soon as possible.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Morrison appears in the Appendix 
on page 35.
---------------------------------------------------------------------------
    First, I want to thank you, Senator Collins, for chairing 
today's hearing and your ongoing leadership in the Senate 
Diabetes Caucus.
    As you well know, my name is Adam Morrison. Basketball has 
always been a part of my life. I have been shooting hoops since 
I was 13 months old. My dad, John Morrison, coached college 
basketball in Wyoming, South Dakota, and Montana. Now I am a 
professional basketball player with the Charlotte Bobcats of 
the National Basketball Association. I was drafted in 2006 
after playing 3 years at Gonzaga University in Spokane, 
Washington. I love playing basketball. The game takes 
determination, focus, and discipline. In fact, diabetes has 
just made me more determined to make it in the NBA.
    I was diagnosed with type 1 diabetes when I was 14. My mom 
and dad knew that there was something wrong when I lost 30 
pounds in one month, and let's just say I wasn't very big. When 
I was out at basketball camp at Gonzaga, I started noticing the 
symptoms. I felt very sick, dizzy, and tired. I scored four 
points in 3 days. I couldn't do anything. I was taken to the 
hospital, where I stayed for 3 days. It was hard at first to 
understand what was happening to my body, to know that I would 
be living with diabetes for the rest of my life. The first time 
the nurse came in to give me a shot of insulin, I told her that 
I wanted to do it myself because I felt like it was part of 
what I needed to do.
    I was fortunate to be surrounded by people who gave me 
positive encouragement right from the first day of my 
diagnosis. My endocrinologist, Dr. Ken Cathcart, came into my 
room at the hospital and looked me right in the eye and told me 
that I was going to be OK and I could do anything with my life. 
Having diabetes was not going to stop me from dreaming big 
dreams. Then I just went back to being a normal kid and playing 
basketball. I didn't want to miss any time on the court.
    In my senior year of high school in Spokane, I broke 
single-season and career scoring records in my high school 
conference and led my school to the finals of the State 
tournament.
    Before I went on to the NBA, I was lucky to have the 
opportunity to reach out to other people with diabetes, like 
Chris Dudley, who played in the National Basketball Association 
for 14 years. Chris told me that, short of a cure, the one 
thing he wished for was to play one game where he didn't have 
to focus on his diabetes. That is true for me, too.
    I test my blood glucose levels every day and several times 
during games. I wonder if it is too low. It is always on my 
mind. I have to stay really disciplined to keep it all together 
when I play basketball. For example, I wait exactly 2 hours and 
15 minutes before tip-off and eat two five-ounce steaks, a 
vegetable, and a baked potato. It is the same meal before every 
game so that I can keep my glucose levels as balanced as 
possible.
    When I am not playing basketball, I wear an insulin pump 
that attaches to a small catheter in my abdomen, and like all 
the kids in this room, I have to stick my finger to test my 
blood glucose level anywhere from 10 to 12 times every day. We 
all have to calculate the number of carbohydrates we eat, the 
amount of exercise we get, and the insulin we need to take to 
keep our blood sugar level in the normal range.
    I look around this room and I see kids who are at the age 
that I was when I was diagnosed. It is when my life changed. It 
seemed like it just happened overnight, and then it changed 
forever. Our diabetes is with us every day of our lives. It 
never goes away, and we never get a time out.
    I want to be a role model for people with diabetes and show 
the 150 kids that are sitting here today that you can still do 
what you want to do. You can still be successful and have 
diabetes. It is a disease that you can't see, but you still 
have to be careful or you will have complications. You have to 
have determination. You have to continue to dream big dreams, 
but follow your doctor's advice and stay healthy.
    To the Senators in this room, I want to ask you to do 
everything in your power to help us find a cure by funding the 
best research that we possibly can have in this country. The 
insulin we take is not a cure, but simply a life support. We 
must continue to strive for a cure.
    Congress can and must reauthorize and fund the Special 
Diabetes Program that gives us all hope. We must allow 
scientists to take full advantage of the research opportunities 
that currently exist that may lead to new treatments and a 
cure. Have the determination, focus, and discipline for a win 
here today. Please fund diabetes research. It is life or death 
for many of us.
    Thank you for the opportunity to speak today.
    Senator Collins. Thank you very much, Mr. Morrison.
    [Applause.]
    Thank you for your testimony. Basketball happens to be my 
favorite sport, so I don't know whether that is why JDRF chose 
you to come here today, but they clearly chose very well, and I 
appreciate your being here.
    I suspect that a lot of the children who are here today 
play sports. If you play a sport, put up your hand.
    [Show of hands.]
    Wow. That is great. That is terrific. Well, you have just 
heard that sports are good for you and it is something that you 
can do.
    Dr. Rodgers, we are delighted to have you here today, as 
well. Please proceed.

 TESTIMONY OF GRIFFIN P. RODGERS, M.D., M.A.C.P.,\1\ DIRECTOR, 
    NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY 
  DISEASES, NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF 
                   HEALTH AND HUMAN SERVICES

    Dr. Rodgers. Thank you, Senator Collins and Members of the 
Committee. Good morning. Thank you for the invitation to 
testify today about type 1 diabetes.
---------------------------------------------------------------------------
    \1\ The prepared statement of Dr. Rodgers appears in the Appendix 
on page 37.
---------------------------------------------------------------------------
    And as the newly appointed Director of the National 
Institute of Diabetes and Digestive and Kidney Diseases, I am 
pleased to provide you with some brief highlights of the formal 
testimony, which I have submitted for the record.
    But before I begin, let me acknowledge your leadership, 
Senator Collins, in really focusing attention on type 1 
diabetes research, which is benefiting every child here today.
    Now, in response to the Committee's request, I am pleased 
to highlight some of the research advances and opportunities 
made possible by the Special Statutory Funding Program for Type 
1 Diabetes Research.
    This program is administered by our Institute on behalf of 
the Secretary of Health and Human Services. It involves 
numerous other components of the National Institutes of Health, 
as well as the Centers for Disease Control and Prevention and 
patient advocacy groups. The Juvenile Diabetes Research 
Foundation International, in particular, is an important 
partner in our research efforts to prevent and to ultimately 
cure type 1 diabetes.
    Type 1 diabetes is an autoimmune disease in which the 
body's own immune system attacks and destroys insulin-producing 
beta cells in the pancreas. I provided with my testimony two 
handouts. I have shown on the first handout that it is a slowly 
progressive disease.\1\ In genetically susceptible individuals, 
an inciting event such as some as yet unknown environmental 
trigger, leads to the immune system's destruction of these 
insulin-producing beta cells. The beta cells may be destroyed 
over the course of months or perhaps years before patients lose 
their ability to make sufficient insulin to regulate blood 
sugar levels. This loss is depicted by diabetes onset on that 
figure. When diagnosed, patients require insulin administration 
to live, and over time, patients can go on to develop disease 
complications that affect their eyes, their hearts, their 
nerves, and other organs throughout the body.
---------------------------------------------------------------------------
    \1\ The documents submitted by Dr. Rodgers appear in the Appendix 
on page 30.
---------------------------------------------------------------------------
    The Special Diabetes Program supports a multi-pronged 
research effort to study every aspect and every step of type 1 
diabetes progression that is depicted. For example, we are 
searching for genetic factors and environmental triggers of the 
disease, disease prevention strategies, new ways to slow or 
stop disease progression in newly diagnosed patients, 
innovative approaches to disease management, novel strategies 
to prevent and to treat complications, and ways to cure the 
disease by cell replacement therapy.
    Our efforts are already paying off with improvements in the 
lives of type 1 diabetes patients. For example, recent data 
have demonstrated that patients are living longer, healthier 
lives than ever before. We have evidence that prevention 
efforts are reducing the rate of diabetic kidney disease. A 
long-term study has shown that intensive therapy to control 
blood sugar levels in patients not only dramatically reduces 
the risk of complications involving the kidneys, the nerves, 
and the eyes, but it also reduces the risk of heart disease. 
New continuous glucose monitoring technologies are making it 
easier for patients to control their blood sugar levels, which 
as I mentioned is key to preventing these disease 
complications.
    Now, as shown in that second handout, there are three new 
minimally invasive continuous glucose monitoring devices that 
have recently been approved or are currently undergoing 
approval processes by the Food and Drug Administration.\1\ One 
of these devices was recently approved for use in children.
    The progress I have highlighted demonstrates how research 
is leading to tangible improvements in health and quality of 
life, but it really is imperative that we build upon these 
advances to further benefit the children here today and all the 
other people with type 1 diabetes.
    I am pleased to report that we are poised for even more 
achievements with the launch of numerous long-term, high-
impact, collaborative research efforts to combat type 1 
diabetes and its complications. These efforts receive support 
from the Special Statutory Funding Program for Type 1 Diabetes 
Research.
    For example, one long-term, large-scale, and bold 
undertaking is called The Environmental Determinants of 
Diabetes in the Young (TEDDY). This study is currently 
enrolling newborns and following them until the age of 15 years 
in order to identify environmental triggers of the disease. 
TEDDY is the only study in the world that has the significant 
statistical power to give us this information. If we determine, 
for example, that it is a virus, or a component of food, or 
some other environmental trigger of disease, this knowledge 
would be critically important and could revolutionize our 
ability to prevent type 1 diabetes. Just as past long-term NIH 
investments in research have improved patient care, we are 
extremely optimistic that the long-term investment in TEDDY 
could result in a major breakthrough in our understanding of 
how type 1 diabetes develops.
    Through networks supported by the Special Diabetes Program, 
the NIH has also recently launched new clinical trials to test 
therapies to prevent type 1 diabetes or to stop the progression 
of the disease in patients who have been recently diagnosed. 
These networks are critically important for testing emerging 
therapies for disease prevention and early treatment. The 
program has also enabled the creation of a research pipeline 
that is propelling progress in drug development for diabetes 
complications. This pipeline includes basic research in the 
laboratory, pre-clinical research in animal models, and 
clinical trials in people.
    Research is also ongoing to find ways to replace insulin-
producing beta cells that have been destroyed by immune system 
attack--by transplantation or through other means, such as 
regeneration. Cell replacement therapy can potentially be a 
real cure for this disease.
    Together, these and other efforts are attacking the disease 
at all stages to bring the maximum benefit to the people at 
risk or who already are diagnosed with type 1 diabetes.
    Thank you for this opportunity to provide these highlights 
of the advances and opportunities supported by the Special 
Diabetes Program. The NIDDK looks forward to continuing to work 
with its collaborators and partners, such as the Juvenile 
Diabetes Research Foundation International, in order to achieve 
our common goal of preventing and curing type 1 diabetes. 
Improving the lives of all people with this disease, including 
the children here today, continues to be the motivation behind 
our efforts.
    I am pleased to answer any questions that you may have, and 
thank you again for inviting me.
    Senator Collins. Thank you very much, Doctor.
    [Applause.]
    Thank you. We appreciate your update on the research.
    Senator Levin just came in. He is chairing a Committee 
hearing elsewhere. He has asked that I express his commitment 
to you and also I will put his statement in the hearing record.
    [The prepared statement of Senator Levin follows:]
                   OPENING STATEMENT OF SENATOR LEVIN
    Good Morning. It's wonderful to see so many of our nation's 
children here today to take part in the Children's Congress.
    It's particularly inspiring to see the self-confidence and courage 
these children possess in coming here this week to speak to all of us 
as educators, advocates, and leaders.
    My name is Senator Carl Levin of Michigan, and I serve as Chairman 
of the Armed Services Committee and a Member of the Homeland Security 
and Governmental Affairs Committee.
    I understand that there is a remarkable young man here from my home 
state, Tre Hawkins, who is going to share his story with us today.
    Tre is the only child at his school in Detroit with Juvenile 
Diabetes, and since his diagnosis, he has gained the support of his 
school community where three teachers have taken classes on diabetes in 
case of an emergency and his peers know to give him only sugar-free 
snacks.
    Because of Tre, his teachers, peers, and family have all learned 
about this disease and are now also prepared to help others afflicted 
with Juvenile Diabetes. I thank them for their efforts and commend Tre 
for his continued courage and advocacy.
    Thank you all for coming here today and sharing your stories with 
us and leading us through this campaign to fund research that will help 
find a cure for Juvenile Diabetes.

    Senator Collins. Dr. Rodgers, let me start with you. The 
Special Diabetes Program is currently authorized at $150 
million a year. It expires next year, and this program 
currently provides about 35 percent of all federally supported 
type 1 research. How important is it for Congress to renew this 
funding and increase it to $200 million, as Mary Tyler Moore 
has suggested?
    What would be the impact on diabetes research if this 
program were allowed to expire?
    Dr. Rodgers. Expiration of this Special Funding Program 
would have a significant impact on what we do. We would have to 
eliminate or certainly greatly curtail many of our research 
initiatives currently supported by the program. These include 
research consortia and networks where we are on the threshold 
of realizing research advances from previous investments in 
these opportunities.
    Therefore, I would say the scope and the pace of the 
research will have to be reduced. There is also going to be a 
loss of momentum in bringing the benefits of this research to 
the patients if this special funding isn't extended.
    NIDDK is currently engaged in a process, together with a 
number of outside special experts, to understand what we would 
have to do in terms of prioritization of existing projects. 
Clearly, we will have to either greatly reduce, curtail, or 
substantially cut back on programs that are currently ongoing.
    Senator Collins. And is it important to the research 
underway that the program be extended before it expires? I 
mean, you don't want to have a situation where you have to stop 
important research and then try to pick it up. Is it important 
that Congress act this year to prevent the program from 
expiring next year?
    Dr. Rodgers. Thank you, Senator. If the program is extended 
this year as opposed to next year, that would greatly assist 
our planning and management strategies. For example, we are 
quite reluctant to start long-term projects, particularly 
clinical trials, when there is uncertainty about out-year 
funding.
    Second, the general process at the NIH is that there is 
some lead time associated with the development of special 
research funding opportunities or awards, making announcements 
for these awards, having the proposals come in from the 
investigators, having those proposals reviewed by our so-called 
study sections, and then ultimately awarding them. Now, because 
that process is associated with a lead time, having a seamless 
transition would make this much more effective.
    Senator Collins. Thank you. Mary, you mentioned in your 
testimony that you have been dealing with the complications and 
the course of the disease for nearly 40 years. When you look at 
all the research that is underway, is there a particular 
advance that excites you the most?
    Ms. Moore. Well, yes. The test that shows that, no matter 
how long people have had diabetes, there is now reason to 
believe that the beta cells are still alive, some of them, and 
they can be stimulated to regenerate, to grow and produce 
insulin just like a healthy person's pancreas will.
    That is really good for me because throughout these years 
that I have had diabetes, many things have begun to fail me. I 
have something called claudication in the legs, which means 
that the arteries, the veins are clogged and the blood can't 
get to them. This results in my not being able to walk for more 
than a block and a half without having to stop and overcome the 
pain. I was a dancer, and it is heartbreaking to have to deal 
with that. My vision is at a very low state. I can still get 
by, but boy, you should see my shins. They are so black and 
blue from bumping into things.
    Senator Collins. Adam, you are a great role model to the 
children who are here today. You show them that you can be a 
world-class athlete despite having diabetes. Do you have any 
particular advice that you would like to give these children 
today?
    Mr. Morrison. Yes. I had the chance to speak to these 
delegates yesterday, and I will say it again to all these kids 
that what you are doing here in Washington is very special for 
you young kids. And what Dr. Rodgers and Mary are doing is 
great. And understand that, if you take care of yourself, you 
are going to be fine. You can do whatever you want, whether 
that is athletics or whatever you want to pursue your dreams 
in. I was told that when I was diagnosed, and so that is the 
message I want to send to all these young kids. Hopefully, with 
your help in Congress, we can find a cure in their lifetime and 
we won't have to have these meetings anymore. So thank you.
    Senator Collins. Thank you.
    Mary, the last Children's Congress--or actually I think it 
was the 2003 Congress, focused on the Pancreatic Islet Cell 
Transplantation Act. I introduced that bill, and thanks to the 
great grassroots efforts of JDRF, it was signed into law. Do 
you know where that research stands and how it is going? I am 
going to ask Dr. Rodgers, as well, but I would like----
    Ms. Moore. I think you should ask Dr. Rodgers----
    Senator Collins. OK. [Laughter.]
    Ms. Moore [continuing]. But I know in broad strokes, it is 
going very well.
    Senator Collins. Thank you. Dr. Rodgers, could you give us 
an update on that bill, because without the work of all the 
families who are in this room, we would not have gotten that 
bill signed into law, and it is an example where the grassroots 
efforts of JDRF have made such a difference.
    Dr. Rodgers. You are absolutely right, Senator. Having this 
move forward really has made a tremendous difference. This 
legislation gave credit to organ procurement organizations for 
pancreata used to procure islets for basic and clinical 
research. This incentive made it easier for islet processing 
sites to obtain pancreata for isolating islets.
    We think the major benefit of this legislation will be 
realized when our Clinical Islet Transplantation Consortium 
begins islet transplantation protocols, which will involve over 
150 patients. A large number of pancreata will be needed for 
these trials. The law is really critically important because it 
is allowing this to occur in a seamless manner. It has had a 
major benefit, and I applaud the effort in moving that forward.
    Senator Collins. Thank you.
    I am going to thank this panel of witnesses. There are many 
more questions that I could ask you, but I am very cognizant of 
the young people that we have with us today. So thank you so 
much for your eloquent and encouraging testimony. It has been a 
great honor to work with you, and I very much appreciate your 
being here today. Thank you.
    [Applause.]
    I am now going to call forward our next panel of witnesses 
this morning. It consists of children who know first-hand the 
burdens of living with diabetes.
    Our witnesses on this panel are Caroline McEnery of 
Fairfield, Connecticut; Caitlin Crawford of Yarmouth, Maine; 
Tre Hawkins of Detroit, Michigan; and Abraham and Curtis 
Strader of Lakeville, Minnesota, who are accompanied by their 
mother, Ann.
    All of the members of this panel are delegates to the 
Juvenile Diabetes Research Foundation Children's Congress and 
other delegates have obviously joined us in the well, as well, 
today.
    I also want to recognize the other delegate from Maine who 
is here today. That is the Chairman's prerogative, the home 
State prerogative, and that is Aiden Sweeney, and Aiden and his 
mother testified a year ago at a hearing that we held to look 
at the progress we were making in producing an artificial 
pancreas.
    So I want to thank you all for being here, and we are going 
to start with Caroline. Thank you, Caroline.

   TESTIMONY OF CAROLINE McENERY,\1\ DELEGATE, AGE 17, JDRF 
          CHILDREN'S CONGRESS, FAIRFIELD, CONNECTICUT

    Ms. McEnery. Good morning, Senator Collins, Senator 
Lieberman, and Members of this Committee.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. McEnery appears in the Appendix 
on page 51.
---------------------------------------------------------------------------
    I would like to thank Senator Lieberman for all that he 
does to help us come closer to a cure. I am so proud to be from 
Connecticut and appreciate his commitment to advancing diabetes 
research.
    Thank you for inviting me and the other kids on this panel 
to speak to you today. It is exciting and a little scary to be 
part of a congressional hearing, but I know that it is 
important for Congress to hear from kids who are living with 
type 1 diabetes every day, and I am thankful for this 
opportunity.
    My name is Caroline McEnery, and I am 17 years old. I was 
diagnosed with juvenile diabetes when I was 9. Unlike most 
children with diabetes, I wasn't diagnosed by a doctor. I was 
diagnosed by my mom and dad. This is because diabetes is not a 
rarity in my family. My older sister, Caitlin, now 22, was 
diagnosed with diabetes when she was 3. As soon as I began to 
display symptoms, my parents knew exactly what was wrong with 
me. Their worst nightmare had come true. They now had two 
children living with this disease.
    Finding out that I had diabetes was especially hard for me. 
I had watched my sister struggle with the disease for 9 years 
before I was diagnosed, and what I was about to endure was no 
surprise. I knew how demanding diabetes was and that it would 
be with me every second of every day until a cure is found. I 
knew that with each meal came a needle, with each birthday 
party, a sugar-free cake, and with each good night to my 
parents, the worry about a low blood sugar episode during the 
night. More than anything, I knew that I would be different 
than all of my friends.
    I am lucky to have a family that already knew so much about 
diabetes at the time of my diagnosis. However, despite their 
knowledge, diabetes still takes a toll on all of us. My mom and 
dad have to get up in the middle of the night to check my blood 
sugar at 2 a.m. to make sure that I am not too high or too low 
in order to prevent seizures. If my blood sugar is too high 
before a family mealtime, everyone must wait to eat so that my 
insulin has time to work.
    My diabetes and the vigilant scheduling that it requires is 
a burden on my entire family. No matter how hard we try to work 
around it, we can never avoid it.
    Not a minute goes by when I forget that I have diabetes. My 
insulin pump is attached to me 24 hours a day, and until a cure 
is found, I will never get a break from it. Whether I am at 
home, at school, or on the volleyball court, I am always 
worrying about what my blood sugar is. As much as I try to hide 
having diabetes, it is inescapable. When I go out for ice cream 
with friends, it is never just ice cream to me. It is 40 grams 
of carbohydrates and four units of insulin.
    There are days where I just want to give up on my diabetes, 
but I keep going. My strength for handling this challenging 
disease comes from the hope that someday soon, I will no longer 
have to.
    When we were small, my sister and I shared a bedroom. At 
night, we would talk about things like Disney princesses, 
Barbie dolls, and what we wanted to be when we grew up. As we 
grew older, the topics ranged from boys and makeup to clothes 
and nail polish. However, after diabetes shattered our family 
for a second time, our late-night talks became an opportunity 
for us to voice our fears to one another about the burden of 
managing diabetes every day and the threat of complications 
that we both face in the future.
    No matter how many times a day I check my blood sugar, 
change my pump site, exercise, or closely count carbohydrates, 
I still face the impending risks of blindness, heart disease, 
kidney disease, and nerve damage. Every year, I have an annual 
eye doctor appointment, not because I am near- or far-sighted, 
but to screen for complications of diabetes in my eyes. I dread 
this appointment because despite of all the work I do day in 
and day out to manage my diabetes, I still fear that every year 
will be the year they tell me I am going to begin to lose my 
sight because of my diabetes.
    Researchers all over the world are working to find a cure, 
and I know that the funding Congress provides for research is 
helping and is resulting in exciting advances. One advance that 
is very real to me is the development of continuous glucose 
sensors that track a person's blood sugar level in almost real 
time and help them to stay in better control to reduce their 
risk for developing complications later in life.
    At the beginning of this year, I began participating in a 
continuous glucose monitoring clinical trial. The CGM is a 
system that is built into my insulin pump. I wear a 
transmitter, which is connected to a wire probe and inserted 
under my skin. I have to change the second site every 3 days, 
in addition to my pump site, which I change every other day. 
The CGM gives me freedom, which I did not have before. I no 
longer worry about having a seizure during the night because my 
sensor will alert me before this happens. I can participate in 
sports with ease because I can see what my blood sugar is 
throughout my games.
    Although the CGM has made my diabetes care much more 
manageable, it is certainly not a cure. I still have to test my 
blood sugar twice a day and calculate my insulin doses, and 
this trial requires that I visit the doctor every 2 weeks 
rather than every 3 months.
    Congress must do its part, too, by making funding for 
diabetes research a priority. I would have given anything to 
shop for a junior prom dress like all of my classmates without 
thinking about how to incorporate an insulin pump hidden 
underneath. I am fortunate enough to remember what it was like 
to live a life without diabetes, and I hope that someday I can 
experience that again. I want to be able to tell my children 
about the day I was cured of juvenile diabetes, and it can't be 
done without you. Please help me, my sister, and the 3 million 
other Americans with juvenile diabetes be able to say, I used 
to have diabetes.
    Senator Collins. Thank you very much, Caroline.
    [Applause.]
    Thank you. You did a great job. Caitlin from Yarmouth, 
Maine.

   TESTIMONY OF CAITLIN CRAWFORD,\1\ DELEGATE, AGE 13, JDRF 
              CHILDREN'S CONGRESS, YARMOUTH, MAINE

    Ms. Crawford. Hello. My name is Caitlin Crawford, and I am 
13 years old, and I live in Yarmouth, Maine. Maine is a great 
place to live, and I feel so lucky to have you, Senator 
Collins, as my Senator. You do so much for people with 
diabetes, and you give us all so much hope. Thank you for that.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Crawford appears in the Appendix 
on page 53.
---------------------------------------------------------------------------
    I was diagnosed with type 1 diabetes 22 months ago on 
August 19, 2005. That was the day my life changed forever. 
Unlike some of the kids in this room, I remember what life used 
to be like before I had diabetes, and I would give anything to 
go back to being a normal kid. Every day for the past 22 
months, I test my blood sugar 10 to 12 times, take five to 
seven insulin shots, and worry all the time, especially when I 
close my eyes at night to go to bed.
    I am a skier on the middle school team in Yarmouth, and in 
a lot of ways, the way I think about each ski race is how I 
think about my diabetes. I have been trained to go down the 
mountain, looking at each gate, attacking the hill, and 
crossing the finish line. In ski racing, the first gate is the 
hardest. As you push out of the starting block, everything has 
to be perfect.
    This is just like getting up in the morning when you have 
diabetes. I really have to think ahead. How do I feel? How much 
exercise will I be doing today? What am I going to eat? How 
much insulin am I going to have to take today? I have to make 
sure that my bag is always full of the supplies that I need to 
carry me through the day. I do sometimes forget and pay the 
consequence later.
    When you are racing, you never really hear the fans as you 
are speeding down the mountain, but you know they are 
supporting you and cheering you on. With diabetes, I need to 
rely on their support every day. My fans are my family, 
friends, coaches, doctors, and nurses.
    My No. 1 fan is my family, and they are amazing. I have 
realized what they have had to give up to help me, especially 
my mother, who left her job when I was diagnosed. My brother, 
Wes, gives up a lot because of me. If I am not feeling well or 
my numbers are off, everything has to stop, and that means 
sometimes something he really wants to do. My dad is the rock. 
He picks us up on all of those hard days. My friends are there, 
but I always feel that I am different and not like them. I wish 
that I could just be like them, to be so carefree. My school 
nurse is also the best. She is always looking out for me so I 
can think about my studies.
    When I ski, sometimes I slip and catch an edge, but I get 
back up and continue on. This is how I feel about diabetes. I 
have had some really bad lows and some really bad highs. I have 
watched a taxi drive away in New York City and realized in that 
cab was my diabetes bag, and we were 300 miles away from home. 
We got it back after a few stressful hours. Another time, I got 
stuck on a chairlift, and as I sat up in the air looking down, 
I realized that I did not have my diabetes supplies with me. 
After 40 minutes, I was still stuck, thinking that this could 
turn into something really bad soon.
    Unlike ski racing, where each race has a beginning and an 
end, diabetes is always with me. I can never take a break. It 
is hard, and sometimes I just want to stop and take a break--
stop testing my blood sugar, stop having to take insulin shots, 
stop counting all the carbs in my food, and stop worrying about 
what might happen to me all the time. But I know this isn't an 
option.
    When I think about my future, I think about being the best 
skier I can be. I also think about what diabetes is doing to my 
body and that unless a cure is found, I might be facing serious 
complications.
    I know that my hope for a cure lies in medical research. I 
am doing my part to keep myself healthy, and I am asking 
Congress to help by providing more funding for research. 
Progress is being made, but there is still more work to do. I 
will continue to do my part, participating in walks, speaking 
to friends, or just being a friend to a new diabetic. But time 
is not on my side, and we cannot do it without your help.
    When I race, I wear the number 19 on my back, and when 
people hear, ``Go Number 19,'' it is just not for me to ski 
faster. It is also the day that my life changed forever. Thank 
you for listening to my story.
    Senator Collins. Thank you very much, Caitlin.
    [Applause.]
    Good job. I can see why you are a good skier, as well, and 
you can count me as part of your team of fans.
    Tre, thank you for being here.

TESTIMONY OF TRE HAWKINS,\1\ DELEGATE, AGE 12, JDRF CHILDREN'S 
                  CONGRESS, DETROIT, MICHIGAN

    Mr. Hawkins. Good morning. My name is Tre Hawkins, and I 
live in Detroit, Michigan. I am 12 years old. To you, I may 
look like a regular kid, but I was diagnosed with type 1 
diabetes when I was 7 years old, and I have spent every day 
since then wanting to be a regular kid, free from diabetes.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Hawkins appears in the Appendix 
on page 55.
---------------------------------------------------------------------------
    It was my grandmother who recognized the symptoms. She was 
worried about my weight, my constant hunger and thirst, and 
about my going to the bathroom every 10 to 15 minutes. She took 
me to see the doctor, and they did a urine test, and my sugar 
level was very high. The doctor had her take me directly to 
Beaumont Hospital, and I stayed there for 3 or 4 days until 
they got my glucose level under control. At that time, I knew I 
was sick, but I didn't know how much my life was going to 
change.
    It was difficult at first at school because my classmates 
didn't understand diabetes. My teachers were concerned about 
what to do if I became sick while at school. Three of my 
teachers took a weekend class to learn about diabetes and what 
to do if I became sick. They then had me talk to my classmates 
about diabetes, and now I have some playground buddies that 
look out for me at recess and know what to do if I get sick.
    I know that I am lucky to have such good support at school. 
It is a little better now, but I still have trouble keeping my 
sugar level in the normal range during school because I have to 
count the carbs I eat and there are no labels on the food to 
tell me how many carbs are in what I am eating. When my sugar 
level goes too high or too low, I have trouble concentrating in 
class and I don't feel well.
    This disease has been a financial burden on my grandparents 
and my mom, but they try hard to make my life as normal as 
possible and they don't complain. When you have type 1 
diabetes, you have to take insulin every day and there are a 
lot of supplies that go along with it.
    I am glad that you invited kids to talk to you about what 
it is like to have diabetes and why a cure is important to us. 
For me, a cure means being able to be a kid, to play baseball 
and ride my bike without fear of my blood sugar dropping too 
low. It means no more pricking my fingers at least five times a 
day. It means no more getting sick at school because my sugar 
level has gone too high. It means no more scheduling my eating 
and counting carbs. For me and the kids just like me, it means 
freedom, freedom to be just a kid.
    Thank you for this opportunity to speak to you today, and 
thank you for listening. I am just a kid, but I have big 
dreams. Right now, my biggest dream is to be cured from 
diabetes. Please remember me--Tre Hawkins from Detroit, 
Michigan--and work hard to provide more money for diabetes 
research so this dream can become a reality.
    Senator Collins. Thank you, Tre. Great job.
    [Applause.]
    Thank you, Tre. You did a terrific job.
    We are now going to hear from Ann, who is going to speak on 
behalf of her sons.

   TESTIMONY OF ANN STRADER,\1\ MOTHER OF ABRAHAM AND CURTIS 
STRADER, DELEGATES, AGE 6, JDRF CHILDREN'S CONGRESS, LAKEVILLE, 
                           MINNESOTA

    Ms. Strader. Senator Collins and Senator Lieberman, thank 
you for holding this hearing and giving us the opportunity to 
share our stories with you. I am speaking today on behalf of my 
6-year-old identical twin boys, Abraham and Curtis Strader, who 
both live with type 1 diabetes.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Strader appears in the Appendix 
on page 56.
---------------------------------------------------------------------------
    Raising twin boys lends itself to a lot of energy, 
enthusiasm, wrestling, and noise. Raising twin boys with 
diabetes requires constant management, daily care, and 
thousands of finger pokes.
    I remember after Abe and Curt were born, we brought them 
home from the hospital. I would often sit in the glider in 
their nursery and just watch them sleep. They were absolutely 
precious. I felt a sense of joy that was accompanied by the 
overwhelming feeling of being their protector. I knew that my 
boys would be well loved, cared for, and that my husband and I 
would always keep our boys protected and safe. Then, just 2 
years later, diabetes struck.
    In 2003, when Abe and Curt were just 2 years old, both were 
diagnosed with diabetes in a span of 2 weeks. In that 2-week 
period, half our family had become diabetic. Neither my 
husband, Neil, nor I have a single case of type 1 diabetes in 
our extended families. We quickly learned the seriousness of 
diabetes and the importance of managing the disease in order to 
keep our boys healthy.
    Children with diabetes typically have a shortened life 
expectancy and a higher risk of stroke, blindness, and kidney 
failure. All of those devastating eventual effects seem far 
off, but the one that always scares me the most is the fact 
that no one knows how low blood sugars affect brain development 
in young children like Abe and Curt.
    With the diagnosis came the loss of predictability and 
stability. I took a leave from my job as a teacher to stay home 
and provide full-time care for my boys. I no longer could leave 
them with just someone who would provide care for them. I could 
only leave them with someone who knew how to check blood 
sugars, give insulin shots, count carbohydrates, document with 
detail, and identify symptoms of hypoglycemia and 
hyperglycemia. Of course, they must be able to give a glucagon 
shot in case my child were to become unconscious.
    I remember when we were in the hospital with Abraham, and 
he would cry and cry when the nurse would come in to give him 
shots. He would scream, ``Make her stop, Mommy. Make her 
stop.'' My heart was crushed. I was Abe's protector, and now 
this disease had made me helpless. I realized that soon I would 
be the one giving him shots that were causing him fear, pain, 
and anger. I have no choice but to do this. It is a matter of 
fact that without proper management and care, our children 
would die.
    As a family, my husband and I have made a commitment to 
manage the disease so that the disease doesn't manage us. But 
most days, this is easier said than done. Abe and Curt are not 
able to consistently tell us when they feel like their blood 
sugar is high or low. It is a matter of constant testing. As 
parents, we have to try to judge if their behavior is related 
to blood sugars or are they just acting like regular kids.
    Their blood sugars are impacted by food, exercise, anxiety, 
and their own growing bodies. Sometimes exercise will impact 
Abe and Curt immediately, and other times it will drop them low 
up to 12 hours later. It is this sort of unpredictability that 
keeps us getting up every night at all hours to check their 
blood sugar. I can't even begin to describe to you the worry 
that we have as parents that we carry around with us every day 
and night. Worry that we are not managing their diabetes as 
well as we should, worry that one of my boys will experience a 
low blood sugar episode in the night and not wake up in the 
morning, worry that as much as we try to allow them to be 
regular kids, diabetes is robbing them of their childhood, and 
worry about what having diabetes will mean for them as they 
grow older.
    But this worry is nothing compared to what Abe and Curt go 
through every day. Neil and I have administered approximately 
5,500 shots and 23,360 finger pricks to our boys in the past 4 
years. For the first 2 years living with diabetes, my children 
received three to four insulin shots a day and we checked their 
blood sugar with a finger poke six to ten times around the 
clock. My husband remembers having to ask a neighbor to come 
over to help hold one of the boys down so he could administer a 
shot.
    When Abe and Curt were 4 years old, they started wearing 
insulin pumps. We have experienced great relief from shots, but 
finger pokes are still constant. We have experienced tighter 
management, but high and low blood sugars are still a battle. A 
pump is a great management tool, but it is not a cure.
    After the boys were diagnosed, my husband and I knew we had 
to make a choice. We could sit around and feel victimized, or 
we could become proactive in finding a cure for this disease. 
Over the past 4 years, we have actively raised money for JDRF 
through our local Walk For a Cure. Our family team, Team Twin 
Power, has raised over $45,000, and I do all I can for JDRF in 
its mission for a cure. However, I know that no matter how much 
money our family or families like mine across the country 
raise, we need increased Federal support for diabetes research 
to get to our goal of finding a cure.
    I am asking Congress--on behalf of Abe and Curt and the 
millions of kids who are living with type 1 diabetes--to 
increase Federal funding for diabetes research. Be our partner. 
Give Abe and Curt the hope that a cure will be found in their 
lifetime. I promised my boys that I will do all I can to get to 
a cure as soon as possible. I am asking you to make the same 
promise to them.
    I would like to share a few statements that Abe and Curt 
have made about living with diabetes and what they would like 
our lawmakers to know about living with this disease.
    Abe has said, ``I want to tell lawmakers we have to get a 
cure for diabetes so I wouldn't have to wear a pump all the 
time. I want them to know it hurts when my mom has to change my 
site. I would like to tell them that sometimes my blood sugar 
is low, and it makes me feel really dizzy and sick. It is hard 
to do my best work at school when I feel dizzy and sick.''
    And Curt says, ``I want to tell people in Washington I 
don't like having diabetes. I have to wear a pump all the time 
or I would get really sick. One day, I threw up at school 
because my blood sugar was really high. I didn't feel well at 
all.''
    Abe and Curt have just finished kindergarten. They enjoy 
playing soccer, T-ball, and going to water parks. They don't 
know what life is like without a blood sugar meter, shots, a 
pump, and counting carbohydrates. I would give anything for 
them to know a future without diabetes.
    This past December, my son Abe woke up on Christmas 
morning, and just like thousands of other kids, he could hardly 
wait to open gifts. He quickly ripped into a colorful box from 
his grandma. Inside the box, she had put a small Star Wars toy 
and several dollar bills for him to pick out something at the 
store. Abe quickly grabbed the toy and turned to me and said, 
``Wow, Mom. Look at all this money we can use to find a cure 
for diabetes.''
    It is not every 6-year-old who thinks about giving money to 
research. We all look forward to a day without diabetes.
    Senator Collins. Thank you very much.
    [Applause.]
    Thank you. Do either Curtis or Abe want to say anything to 
us?
    Curtis Strader. Please promise to remember me.
    Abraham Strader. Please promise to remember me.
    Senator Collins. I promise.
    [Applause.]
    Good job, boys. Thank you very much for your testimony.
    Ann, let me start with my first question for you. First of 
all, I so admire your devotion to your children, but also your 
advocacy work. It seems to me that another advantage when you 
get involved in a group like JDRF is you meet other families 
who are coping with the same kinds of challenges that you are 
having. Has that been helpful to you as well from that 
perspective?
    Ms. Strader. I think it helps you to keep from feeling 
isolated, and to come here and see all these kids, I know for 
Abe and Curt, we don't know very many other children in our 
area that they are friends with that have diabetes, and so for 
them to come here and see all the kids in yellow shirts is 
helpful for them. I remember them looking at me and saying, 
``All these kids have diabetes?'' and they couldn't believe it. 
It was very evident when we were standing to sing on the 
Capitol lawn and Abe found two other kids that have matching 
purple pumps with his and just how affirming that was for him 
that other kids deal with this day in and day out. It is a 
great thing for families like ours to get involved with JDRF, 
and it helps to create awareness for other people, as well.
    Senator Collins. Thank you.
    Tre, I understand that you are interested in being a 
professional football player when you grow up, is that right?
    Mr. Hawkins. Yes. I want to be a running back.
    Senator Collins. All right. So did it help you today to 
hear Adam's testimony? He is a professional athlete. Does that 
help to inspire you to achieve your goal, too?
    Mr. Hawkins. Yes.
    Senator Collins. Did you know any other children who had 
juvenile diabetes at your school in Michigan?
    Mr. Hawkins. Nobody. I am the only one who has diabetes in 
my school.
    Senator Collins. Is that hard for you?
    Mr. Hawkins. Yes.
    Senator Collins. I bet it is, but it sounds like you have 
got some good buddies that help you, is that right?
    Mr. Hawkins. Yes, I do.
    Senator Collins. So that must be a help.
    Caitlin, what about you? Was it hard to tell your friends 
about your diabetes?
    Ms. Crawford. It kind of was because no one really knows 
what it is. There are only five of us in our whole town, and 
four of them are all in the high school. I am the only one in 
the middle school. So no one really had any idea, but no one 
really treats me any differently.
    Senator Collins. That is great. So your friends help you, 
also. And it sounds like you have a great school nurse who 
helps, as well. That must be a plus for you, too.
    And Caroline, you told us about the clinical trial that you 
are part of, the continuous glucose monitor. How did you find 
out about this clinical trial?
    Ms. McEnery. Well, one of the doctors at the Yale Diabetes 
Program told me about it, and I was really interested in 
becoming a participant, so I called the woman who was running 
it and then I started.
    Senator Collins. That is great. That is not only going to 
help you, but by your participating in this clinical trial, you 
will help all these other children who might benefit from that 
kind of monitor in the future. So I think you should feel 
really good about that.
    Ms. McEnery. Yes, I do.
    Senator Collins. That is great.
    Caitlin, when you found out that you had diabetes, were you 
worried that you might not be able to be on the ski team 
anymore?
    Ms. Crawford. Well, I knew my uncle had diabetes, but I 
didn't really know what it meant. I didn't really think much 
about skiing at the time. I was just thinking, am I going to be 
OK? I was kind of nervous at first starting again because I 
wasn't sure what was going to happen with sports now. But 
sports are a big part of my life. I do lacrosse in the spring, 
and I do soccer in the spring, and I do skiing, both Nordic and 
downhill, in the winter, and then I do soccer in the fall, so 
it helps maintain my blood level.
    Senator Collins. That is wonderful. I think it is just 
great that you have kept all that up.
    I do want to thank all of you for being here today. You 
remind of us how important the mission is for us to renew the 
Special Diabetes Program and increase the funding from $150 
million to $200 million.
    And I want to tell all of the children who are here today 
that you have a special assignment, OK. Here is your 
assignment. It is a little bit like homework, but it is more 
fun. Your assignment is to go see your Members of Congress or 
your Senators and tell them that we need more money for 
research. Will you do that for me?
    Chorus. Yes.
    Senator Collins. Good because, you know, if you go and talk 
to them, I will tell you, we will get the job done.
    All of you have asked that I remember you, and I just 
wanted to say to all the children who are here today that I 
promise to remember each and every one of you and to work for 
the funding that will produce better treatments, but most 
importantly, that will point the way to a cure.
    So thank you so much for coming all the way from your home 
States to be with us today. You remind us of what this is all 
about, and you inspire us to continue to fight for the money 
for diabetes research. So thank you so much for being here 
today.
    I want to thank JDRF for doing just a wonderful job and 
Mary Tyler Moore, who is such an inspiring international 
chairman and who has helped advance the public's understanding 
of this terrible disease. I want to thank all of you who have 
come from all around the country.
    I want to thank Larry Soler, who we work so closely with 
and does such a fabulous job for JDRF.
    I also want to thank Priscilla Hanley on my staff. She has 
worked with me for years, and she has adopted this as her 
personal cause, as well as mine.
    So thank you all for teaching us so much today, for putting 
a human face, such wonderful human faces, on this disease and 
for inspiring us to fight for a cure. Thank you.
    The hearing record will remain open for 15 days for 
additional materials, and this hearing is now adjourned. Thank 
you.
    [Whereupon, at 11:07 a.m, the Committee was adjourned.]










































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