[Congressional Record (Bound Edition), Volume 153 (2007), Part 19]
[House]
[Pages 27144-27147]
[From the U.S. Government Publishing Office, www.gpo.gov]




                            ALS REGISTRY ACT

  Ms. BALDWIN. Madam Speaker, I move to suspend the rules and pass the 
bill (H.R. 2295) to amend the Public Health Service Act to provide for 
the establishment of an Amyotrophic Lateral Sclerosis Registry, as 
amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                               H.R. 2295

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``ALS Registry Act''.

     SEC. 2. FINDINGS.

       Congress makes the following findings:
       (1) Amyotrophic lateral sclerosis (referred to in this 
     section as ``ALS'') is a fatal, progressive neurodegenerative 
     disease that affects motor nerve cells in the brain and the 
     spinal cord.
       (2) The average life expectancy for a person with ALS is 2 
     to 5 years from the time of diagnosis.
       (3) The cause of ALS is not well understood.
       (4) There is only one drug currently approved by the Food 
     and Drug Administration for the treatment of ALS, which has 
     thus far shown only modest effects, prolonging life by just a 
     few months.
       (5) There is no known cure for ALS.
       (6) More than 5,000 individuals in the United States are 
     diagnosed with ALS annually and as many as 30,000 individuals 
     may be living with ALS in the United States today.
       (7) Studies have found relationships between ALS and 
     environmental and genetic factors, but those relationships 
     are not well understood.
       (8) Scientists believe that there are significant ties 
     between ALS and other motor neuron diseases.
       (9) Several ALS disease registries and databases exist in 
     the United States and throughout the world, including the 
     SOD1 database, the National Institute of Neurological 
     Disorders and Stroke repository, and the Department of 
     Veterans Affairs ALS Registry.
       (10) A single national system to collect and store 
     information on the prevalence and incidence of ALS in the 
     United States does not exist.
       (11) In each of fiscal years 2006 and 2007, Congress 
     directed $887,000 to the Centers for Disease Control and 
     Prevention to begin a nationwide ALS registry.
       (12) The Centers for Disease Control and Prevention and the 
     Agency for Toxic Substances and Disease Registry have 
     established three pilot projects, beginning in fiscal year 
     2006, to evaluate the science to guide the creation of a 
     national ALS registry.
       (13) The establishment of a national registry will help--
       (A) to identify the incidence and prevalence of ALS in the 
     United States;
       (B) to collect data important to the study of ALS;
       (C) to promote a better understanding of ALS;
       (D) to collect information that is important for research 
     into the genetic and environmental factors that cause ALS;
       (E) to strengthen the ability of a clearinghouse--
       (i) to collect and disseminate research findings on 
     environmental, genetic, and other causes of ALS and other 
     motor neuron disorders that can be confused with ALS, 
     misdiagnosed as ALS, and in some cases progress to ALS;
       (ii) to make available information to patients about 
     research studies for which they may be eligible; and
       (iii) to maintain information about clinical specialists 
     and clinical trials on therapies; and
       (F) to enhance efforts to find treatments and a cure for 
     ALS.

     SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

       Part P of title III of the Public Health Service Act (42 
     U.S.C. 280g et seq.) is amended by adding at the end the 
     following:

     ``SEC. 399R. AMYOTROPHIC LATERAL SCLEROSIS REGISTRY.

       ``(a) Establishment.--
       ``(1) In general.--Not later than 1 year after the receipt 
     of the report described in subsection (b)(3), the Secretary, 
     acting through the Director of the Centers for Disease 
     Control and Prevention and in consultation with a national 
     voluntary health organization with experience serving the 
     population of individuals with amyotrophic lateral sclerosis 
     (referred to in this section as `ALS'), shall--
       ``(A) develop a system to collect data on ALS and other 
     motor neuron disorders that can be confused with ALS, 
     misdiagnosed as ALS, and in some cases progress to ALS, 
     including information with respect to the incidence and 
     prevalence of the disease in the United States; and
       ``(B) establish a national registry for the collection and 
     storage of such data to include a population-based registry 
     of cases in the United States of ALS and other motor neuron 
     disorders that can be confused with ALS, misdiagnosed as ALS, 
     and in some cases progress to ALS.
       ``(2) Purpose.--It is the purpose of the registry 
     established under paragraph (1)(B) to gather available data 
     concerning--

[[Page 27145]]

       ``(A) ALS, including the incidence and prevalence of ALS in 
     the United States;
       ``(B) the environmental and occupational factors that may 
     be associated with the disease;
       ``(C) the age, race or ethnicity, gender, and family 
     history of individuals who are diagnosed with the disease;
       ``(D) other motor neuron disorders that can be confused 
     with ALS, misdiagnosed as ALS, and in some cases progress to 
     ALS; and
       ``(E) other matters as recommended by the Advisory 
     Committee established under subsection (b).
       ``(b) Advisory Committee.--
       ``(1) Establishment.--Not later than 90 days after the date 
     of the enactment of this section, the Secretary, acting 
     through the Director of the Centers for Disease Control and 
     Prevention, shall establish a committee to be known as the 
     Advisory Committee on the National ALS Registry (referred to 
     in this section as the `Advisory Committee'). The Advisory 
     Committee shall be composed of at least one member, to be 
     appointed by the Secretary, acting through the Director of 
     the Centers for Disease Control and Prevention, representing 
     each of the following:
       ``(A) National voluntary health associations that focus 
     solely on ALS and have demonstrated experience in ALS 
     research, care, and patient services, as well as other 
     voluntary associations focusing on neurodegenerative diseases 
     that represent and advocate on behalf of patients with ALS 
     and patients with other motor neuron disorders that can be 
     confused with ALS, misdiagnosed as ALS, and in some cases 
     progress to ALS.
       ``(B) The National Institutes of Health, to include, upon 
     the recommendation of the Director of the National Institutes 
     of Health, representatives from the National Institute of 
     Neurological Disorders and Stroke and the National Institute 
     of Environmental Health Sciences.
       ``(C) The Department of Veterans Affairs.
       ``(D) The Agency for Toxic Substances and Disease Registry.
       ``(E) The Centers for Disease Control and Prevention.
       ``(F) Patients with ALS or their family members.
       ``(G) Clinicians with expertise on ALS and related 
     diseases.
       ``(H) Epidemiologists with experience in data registries.
       ``(I) Geneticists or experts in genetics who have 
     experience with the genetics of ALS or other neurological 
     diseases.
       ``(J) Statisticians.
       ``(K) Ethicists.
       ``(L) Attorneys.
       ``(M) Other individuals with an interest in developing and 
     maintaining the National ALS Registry.
       ``(2) Duties.--The Advisory Committee shall review 
     information and make recommendations to the Secretary 
     concerning--
       ``(A) the development and maintenance of the National ALS 
     Registry;
       ``(B) the type of information to be collected and stored in 
     the Registry;
       ``(C) the manner in which such data is to be collected;
       ``(D) the use and availability of such data including 
     guidelines for such use; and
       ``(E) the collection of information about diseases and 
     disorders that primarily affect motor neurons that are 
     considered essential to furthering the study and cure of ALS.
       ``(3) Report.--Not later than 1 year after the date on 
     which the Advisory Committee is established, the Advisory 
     Committee shall submit a report concerning the review 
     conducted under paragraph (2) that contains the 
     recommendations of the Advisory Committee with respect to the 
     results of such review.
       ``(c) Grants.--Notwithstanding the recommendations of the 
     Advisory Committee under subsection (b), the Secretary, 
     acting through the Director of the Centers for Disease 
     Control and Prevention, may award grants to, and enter into 
     contracts and cooperative agreements with, public or private 
     nonprofit entities for the collection, analysis, and 
     reporting of data on ALS and other motor neuron disorders 
     that can be confused with ALS, misdiagnosed as ALS, and in 
     some cases progress to ALS.
       ``(d) Coordination With State, Local, and Federal 
     Registries.--
       ``(1) In general.--In establishing the National ALS 
     Registry under subsection (a), the Secretary, acting through 
     the Director of the Centers for Disease Control and 
     Prevention, shall--
       ``(A) identify, build upon, expand, and coordinate among 
     existing data and surveillance systems, surveys, registries, 
     and other Federal public health and environmental 
     infrastructure wherever possible, including--
       ``(i) the 3 ALS registry pilot projects initiated in fiscal 
     year 2006 by the Centers for Disease Control and Prevention 
     and the Agency for Toxic Substances and Disease Registry at 
     the South Carolina Office of Research & Statistics; the Mayo 
     Clinic in Rochester, Minnesota; and Emory University in 
     Atlanta, Georgia;
       ``(ii) the Department of Veterans Affairs ALS Registry;
       ``(iii) the DNA and Cell Line Repository of the National 
     Institute of Neurological Disorders and Stroke Human Genetics 
     Resource Center;
       ``(iv) the Agency for Toxic Substances and Disease Registry 
     studies, including studies conducted in Illinois, Missouri, 
     El Paso and San Antonio, Texas, and Massachusetts;
       ``(v) State-based ALS registries, including the 
     Massachusetts ALS Registry;
       ``(vi) the National Vital Statistics System; and
       ``(vii) any other existing or relevant databases that 
     collect or maintain information on those motor neuron 
     diseases recommended by the Advisory Committee established in 
     subsection (b); and
       ``(B) provide for research access to ALS data as 
     recommended by the Advisory Committee established in 
     subsection (b) to the extent permitted by applicable statutes 
     and regulations and in a manner that protects personal 
     privacy consistent with applicable privacy statutes and 
     regulations.
       ``(2) Coordination with nih and department of veterans 
     affairs.--Notwithstanding the recommendations of the Advisory 
     Committee established in subsection (b), and consistent with 
     applicable privacy statutes and regulations, the Secretary 
     shall ensure that epidemiological and other types of 
     information obtained under subsection (a) is made available 
     to the National Institutes of Health and the Department of 
     Veterans Affairs.
       ``(e) Definition.--For the purposes of this section, the 
     term `national voluntary health association' means a national 
     non-profit organization with chapters or other affiliated 
     organizations in States throughout the United States.
       ``(f) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section, 
     $25,000,000 for fiscal year 2008, and $16,000,000 for each of 
     the fiscal years 2009 through 2012.''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from 
Wisconsin (Ms. Baldwin) and the gentleman from New York (Mr. Fossella) 
each will control 20 minutes.
  The Chair recognizes the gentlewoman from Wisconsin.


                             General Leave

  Ms. BALDWIN. Madam Speaker, I ask unanimous consent that all Members 
have 5 legislative days to revise and extend their remarks and include 
extraneous material on the bill under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentlewoman from Wisconsin?
  There was no objection.
  Ms. BALDWIN. Madam Speaker, I yield myself such time as I might 
consume.
  Madam Speaker, I rise in support of H.R. 2295 the ALS Registry Act. 
Amyotrophic lateral sclerosis, or ALS, more commonly known as Lou 
Gehrig's disease, is a fatal, progressive neuro-
degenerative disease affecting approximately 5,600 Americans each year. 
It is estimated that as many as 30,000 Americans have ALS at any given 
time with an average life expectancy of 2 to 5 years from the time of 
diagnosis. Today, no single national patient registry collects and 
stores information on the prevalence and incidence of ALS.
  The ALS Registry Act would create a nationwide registry at the 
Centers for Disease Control and Prevention for ALS and other related 
motor neuron disorders. The patient registry would collect data which 
is urgently needed for ALS research, disease management, and the 
development of standards of care. This will allow us to make real 
progress toward better understanding ALS, and to develop measures for 
prevention, treatment and cure of this dreaded disease.
  Madam Speaker, I would like to thank my friend and colleague, 
Representative Eliot Engel, for his dedication to bringing this bill 
before us today. Madam Speaker, I strongly urge my colleagues to 
support H.R. 2295.
  I reserve the balance of my time.
  Mr. FOSSELLA. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I would also like to thank Congressman Engel and 
Congressman Terry for their efforts in the establishment of the ALS 
Registry Act. As we know, we have an annual event here in Congress when 
we get visits from members of the ALS organization, the association, 
and their advocates, but more importantly the citizens of this country 
who have been afflicted with Lou Gehrig's disease. It is gut-wrenching 
to watch knowing full well what a debilitating disease it is, and it 
knows no boundaries. As has been mentioned by my colleagues, perhaps 
30,000 Americans, perhaps 1,000 in New York State alone, are suffering 
with ALS. I know a gentleman on Staten Island who helped to have built 
one of the largest banks in Staten Island, if not the largest, 
retiring, thinking he was going to enjoy his golden years, and soon 
after that became diagnosed with ALS. To watch the horrific progression 
over the last couple of years is, as I mentioned, gut-wrenching not

[[Page 27146]]

 just to his friends but, I am sure, his family.
  That is why I think it is important that Congress finally step up and 
act, and as a cosponsor of the legislation today, I am pleased to see 
it brought to the House floor today.
  I would like to thank the tireless efforts of the ALS Association and 
advocates in educating and advocating for a cure, which is what we all 
want. Unfortunately, we know little about ALS, a disease that is 
diagnosed for 5,600 Americans each year. Without a cure and without 
treatments to slow the progression of the disease, as has been 
mentioned by Ms. Baldwin, the average life expectancy of a person is 
only 2 to 5 years. It is a death sentence once diagnosed. The rapid 
progression, lack of understanding about its cause, and debilitating 
nature of the disease make it particularly hard on those afflicted with 
ALS, as well as their family and friends.
  We need to give scientists the tools they need to find the treatment 
and cure for ALS. The registry does just that. It creates a single, 
national patient registry to collect and store information on the 
prevalence of incidences of ALS in the U.S. We know of several research 
studies ongoing at the NIH and other private facilities, investigating 
possible risk factors that may be associated with ALS. Researchers are 
working to better determine what genetics and/or environmental factors 
are contributing to developing ALS.
  While there has been incredible and groundbreaking advances in 
science that give hope to people with Lou Gehrig's disease and their 
families, this legislation will provide an important new link that will 
allow scientists to take emerging new discoveries ever closer to a 
cure. And I pray that one day we will have that cure so no families or 
individuals will be afflicted by this terrible disease.
  Madam Speaker, I stand in support, urge adoption and reserve the 
balance of my time.
  Ms. BALDWIN. Madam Speaker, I yield 4 minutes to the bill's author, 
the distinguished gentleman from New York (Mr. Engel).
  Mr. ENGEL. Madam Speaker, I thank the gentlewoman from Wisconsin for 
yielding to me.
  Madam Speaker, I wish to thank you for bringing up the ALS Registry 
Act of 2007 for a vote, H.R. 2295. This is truly a bipartisan measure, 
as well it should be. I introduced this bill with my colleague, Lee 
Terry of Nebraska, and we are proud to have the support of over 275 
bipartisan members of Congress.
  I know that the gentlewoman from Wisconsin who sat next to me on the 
committee was very concerned about this bill. I am glad that the 
gentleman from New York (Mr. Fossella) is here, as well, because I have 
a picture here of Lou Gehrig who, of course, puts a face on this 
disease. ALS is very often known as Lou Gehrig's disease, and we all 
remember the Yankee Clipper, Lou Gehrig. Mr. Fossella and I, both 
coming from New York, we know Lou Gehrig and his tradition very, very 
well.
  Amyotrophic lateral sclerosis, or ALS, is a fatal, progressive 
neurodegenerative disease that affects motor nerve cells in the brain 
and spinal cord. It is very similar to multiple sclerosis. While the 
great baseball player, Lou Gehrig, put a national face on ALS over 65 
years ago, my own family was devastated by the death of my grandmother, 
Dora Engel, my father's mother, who is believed to have passed away as 
a result of ALS when she was about 58 years old.
  Unfortunately, families across the Nation face challenges and 
experience the suffering associated with ALS every single day. As was 
mentioned before, 5,600 people in the U.S. are diagnosed with ALS each 
year. It is estimated that as many as 30,000 Americans have the disease 
at any given time. The average life expectancy for a person who is 
diagnosed with ALS is only 2 to 5 years from the time of diagnosis.
  As was mentioned, the causes of ALS are not well understood and there 
is no known cure. We need to provide hope to change this tragedy today.
  Surprisingly, a single national patient registry which collects and 
stores information on the prevalence and incidence of ALS does not 
currently exist in the United States today. The legislation I 
introduced with my colleague (Mr. Terry) would create an ALS registry 
at the Centers for Disease Control and Prevention and aid in the search 
for a cure from this devastating disease. The registry would collect 
key data, and information is determined by a newly created Federal 
Advisory Committee on the National ALS Registry.
  The ALS Registry Act will also build upon a fiscal year 2006 and 
fiscal year 2007 congressional appropriation which directed the CDC to 
evaluate the science to guide the creation of a National ALS Registry.
  I wish to express my gratitude to the staff of the Centers for 
Disease Control and Prevention, and in particular to the ALS 
Association, who worked for months with me and my staff to improve the 
bill that we had introduced in the previous 109th Congress. I also want 
to thank Chairman Dingell, Ranking Member Barton, House Subcommittee 
Chairman Pallone and Ranking Member Deal for their support of the ALS 
Registry Act. Finally, I especially want to thank John Ford and William 
Garner of Chairman Dingell's staff and Katherine Martin of Ranking 
Member Barton's staff for shepherding this bill through the Energy and 
Commerce Committee. I want to thank Emily Gibbons of my own staff, my 
legislative director, who was also my health expert and really did more 
for this than anybody else I know.
  The establishment of a registry will bring new hope to thousands of 
patients and their families that ALS will no longer be a death 
sentence. I thank my colleagues, and Madam Speaker, I urge the swift 
passage of the ALS Registry Act, H.R. 2295, today.
  Mr. FOSSELLA. I reserve the balance of my time.
  Ms. BALDWIN. Madam Speaker, I yield 1\1/2\ minutes to the gentlewoman 
from South Dakota, Congresswoman Herseth Sandlin.
  Ms. HERSETH SANDLIN. Madam Speaker, I rise in support of H.R. 2295, 
the ALS Registry Act, introduced by the gentleman from New York (Mr. 
Engel). I would like to thank my friend and colleague from Wisconsin 
(Ms. Baldwin) for yielding me time.
  No one who knows or has met someone diagnosed with ALS can fail to be 
moved by the courage, not only of those experiencing the symptoms of 
this disease, but of their family, who help them cope with it every 
day.
  During the National ALS Awareness Month in May, I met with one such 
remarkable family. Daryl and Marlene Thorson of Brandon, South Dakota, 
and their granddaughter, Elizabeth Steel, took the time to visit with 
me. They discussed the importance of this legislation to create a 
National ALS Registry, and they talked about living with ALS. Daryl has 
been diagnosed with ALS, and his wife is a pillar of strength as they 
go through this together. Their love was clear, as was their 
determination. I was struck by their 12-year-old granddaughter, 
Elizabeth, who sees how the disease has affected her grandfather and 
sees her grandmother caring for him. Elizabeth wrote an essay for 
school entitled, ``If I Had a Million Dollars, What Would I Buy?'' And 
Elizabeth dedicated her entire essay to buying supplies for her 
grandfather, funding research, and advocating to Members of Congress.
  Madam Speaker, by establishing a National ALS Registry and providing 
the requisite funding, we can help facilitate the efforts of so many 
across the country, like Elizabeth, like the scientists searching for a 
cure, who are working to conquer ALS and bring comfort to those 
afflicted with it. I urge my colleagues to support this important 
legislation.
  Mr. FOSSELLA. Madam Speaker, I am told that my colleague has no 
further speakers, so I would close. And as I mentioned, I have been 
here now 10 years. I can recall a gentleman by the name of Gary 
Anderson coming up after being diagnosed, a friend from Staten Island, 
and passing after suffering for too long from ALS. It is a

[[Page 27147]]

terrible indictment, Lou Gehrig's disease, that it is, and one day, as 
we say, perhaps this registry will get to a point where no longer will 
our fellow citizens have to suffer. So, for people like Gary Anderson, 
to this day, a gentleman I mentioned before, Harry Doherty, who is 
currently suffering as we speak, I would urge the adoption of this.
  I yield back the balance of my time.
  Ms. BALDWIN. Madam Speaker, in closing, I strongly support this bill. 
As we have heard, this bill would collect data which is urgently needed 
for ALS research and will go a long way toward moving us closer to 
treatments and a cure for this devastating illness.
  Again, I wish to recognize my colleague (Mr. Engel) and other 
colleagues who have spoken today who put a personal face and a personal 
story behind this important legislation.
  Madam Speaker, I urge my colleagues to support this bill.
  Mr. TERRY. Madam Speaker, I rise today in strong support of The ALS 
Registry Act of 2007, originally introduced in May by my colleague 
Representative Eliot Engel of New York and myself. As the bill comes to 
the floor, we have been joined by 275 bipartisan cosponsors in support 
of this important legislation.
  Amyotrophic Lateral Sclerosis (ALS) is a fatal, progressive, 
neurodegenerative disease affecting motor nerve cells in the brain and 
spinal cord. Approximately 5,600 people in the U.S. are diagnosed with 
ALS, also known as Lou Gehrig's Disease, each year. It is estimated 
that as many as 30,000 Americans have the disease. The average life 
expectancy for a person with ALS is two to five years from the time of 
diagnosis. There is no known cure for ALS.
  The most important provision in our bill establishes a national ALS 
registry. There is currently no single national registry which collects 
and stores information on the prevalence and incidence of ALS in 
existence in the United States. The establishment of a national 
registry will help identify the occurrence and frequency of ALS and 
other motor neuron disorders and collect data which is badly needed for 
ALS research, disease management and the development of standards of 
care in order to significantly enhance the nation's efforts to find a 
treatment and cure for ALS.
  A recent article from the New England Journal of Medicine stated that 
``approximately 90 percent of the persons with ALS have the sporadic 
form, which may be caused by the interaction of multiple environmental 
factors and previously unknown genes.'' The purpose of creating a 
registry is to identify if there are any geographic, genetic or 
environmental groups of people that have been diagnosed with this 
terrible disease. This would then allow scientists a better opportunity 
to identify any relevant factors. This registry may sound simple on the 
surface, but it is actually a significant tool in determining the root 
causes of ALS, which would hopefully lead to diagnostic tests and 
screenings to see who is susceptible to the disease.
  Although we know the debilitating effects of ALS, I am moved every 
year when I am visited by patients and their families in my Washington 
office. Despite the extremely challenging medical conditions faced by 
these patients, they make an extraordinary effort to travel to the 
Capitol and share their stories in the hope that we will soon find 
effective treatments and a potential cure so that no one like them will 
have to suffer in the future. The courage shown by ALS patients, as 
well as their families, is inspiring to me.
  All diseases bring hardships on those afflicted, but ALS is 
particularly cruel in the quickness of the onset, the severity of the 
symptoms and the fatal nature of the condition. The provisions in our 
bill creating a nationwide registry for persons afflicted with ALS are 
important steps forward in strengthening the efforts to understand, 
treat and one day eradicate this terrible disease. I urge my colleagues 
to support the ALS Registry Act and I am proud to have worked on this 
very important effort with my friend Mr. Engel. I am also grateful that 
our committee, the Energy and Commerce Committee, took up this 
legislation and advanced the bill to the floor.
  Mr. PATRICK J. MURPHY of Pennsylvania. Madam Speaker, I rise today in 
support of H.R. 2295, to amend the Public Health Service Act to provide 
for the establishment of an Amyotrophic Lateral Sclerosis Registry.
  ALS, more commonly known as Lou Gehrig's disease, is a particularly 
cruel disease and is always fatal, usually between two and five years 
after diagnosis. One of the very few trends researchers have been able 
to identify is that veterans are twice as likely to die from ALS as 
those who have not served in the military. However, Madam Speaker, it 
can strike at any time, regardless of age, race, gender or nationality.
  This fight is personal for me, as my good friend Shelbie Oppenheimer, 
and her husband Jeff have long been advocates for those with ALS.
  Shelbie was diagnosed when she was just 28 years old and has since 
spent countless hours educating friends, family, community members and 
elected officials. Shelbie has been fortunate--still fighting after 10 
years.
  The Oppenheimers have created a wonderful organization based in my 
district in Bucks County, Pennsylvania: Shelbie.org.
  Along with many community partners, they work tirelessly to provide 
opportunities for the children of ALS patients. Jeff and Shelbie, along 
with their daughter Isabel, are a constant inspiration to me and I join 
them in the fight to turn ALS from a disease to a memory.
  It is for Shelbie, Jeff, Isabel and countless others that I am proud 
to be a cosponsor of this bill. This legislation will create, through 
the Centers for Disease Control and Prevention, a single, nationwide 
ALS registry. This Registry is essential to advancing the search for 
treatments and the cure.
  Since we don't know the cause or the cure of ALS, research is the 
key. Enabling researchers, doctors and patients to understand the 
trends and history of the disease is vital to moving forward. The 
Registry will gather data on the environmental and occupational factors 
that may contribute to the disease, including the age, race and 
ethnicity of individuals with ALS, the patients' family histories and 
other information that may be beneficial to advancing research and 
care.
  Madam Speaker, I urge all of my colleagues to join this fight and 
support the ALS Registry Act and vote yes on H.R. 2295.
  Mr. SHAYS. Madam Speaker, I am an original cosponsor of H.R. 2295, 
the ALS Registry Act. The legislation would direct the Centers for 
Disease Control and Prevention to develop a system to collect data on 
ALS and establish a national registry for the collection and storage of 
this data.
  Creating the registry will allow us to better understand the 
incidence and prevalence of the disease, the age, race and ethnicity of 
people who have it, and whether there are any environmental factors 
that are associated with the disease.
  ALS, commonly known as Lou Gehrig's Disease, is a progressive 
neuromuscular disease characterized by a degeneration of the nerve 
cells of the brain and spinal cord leading to the wasting of muscles, 
paralysis and eventual death. Approximately 30,000 individuals in the 
United States are afflicted with ALS, with approximately 5,000 new 
cases each year.
  The life expectancy of an individual with ALS is 3 to 5 years from 
the time of diagnosis. While there is no known cure or cause for ALS, 
aggressive treatment of the symptoms of ALS can extend the lives of 
those with the disease. Promising research gives hope that one day this 
deadly and debilitating disease will be cured.
  Ms. BALDWIN. I yield back the remainder of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentlewoman from Wisconsin (Ms. Baldwin) that the House suspend the 
rules and pass the bill, H.R. 2295, as amended.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds 
being in the affirmative, the ayes have it.
  Ms. BALDWIN. Madam Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.

                          ____________________