[Congressional Record Volume 163, Number 124 (Monday, July 24, 2017)]
[House]
[Pages H6207-H6210]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       PARALYSIS RESOURCE CENTER

  The SPEAKER pro tempore. Under the Speaker's announced policy of 
January 3, 2017, the Chair recognizes the gentleman from Florida (Mr. 
Deutch) for 30 minutes.
  Mr. DEUTCH. Mr. Speaker, I rise today to share the important work of 
the Paralysis Resource Center at the Christopher and Dana Reeve 
Foundation.
  Christopher Reeve put a face on spinal cord injury and had an 
unrelenting drive to pursue the best research in the world. It was his 
vision, it was his passion, and it was his brilliance that attracted 
young scientists to take on the cause and advance the field of spinal 
cord research.
  And while his wife, Dana, was universally known as the model for 
caregiving, her real legacy is the creation of the foundation's 
Paralysis Resource Center that has reached so many of those living with 
paralysis and their families with life-changing resources.
  The President's budget eliminates all funding for the Paralysis 
Resource Center and suggests that the program is duplicative. 
Fortunately, my colleagues in the House appreciate the unique nature of 
the work that the PRC does.
  The PRC consists of a variety of services, communities, and programs, 
including:
  Information specialists trained to help anyone, from newly paralyzed 
individuals and their family members to persons who have lived with 
disabilities for quite some time, by providing individualized support 
and information;
  The Peer and Family Support Program, which builds peer-to-peer 
connections to help individuals find support and resources among the 
communities that best understand the day-to-day realities and long-term 
challenges of individuals living with paralysis;
  The Quality of Life Grants Program, which has awarded over 2,900 
grants, totaling more than $22 million, to broaden the impact of 
nonprofits across the country that foster community engagement and 
involvement while promoting health and wellness for individuals living 
with paralysis; and
  The Military and Veterans Program, the MVP, which supports the unique 
needs of current servicemembers and veterans regardless of when they 
served or how their injury was obtained.
  I urge my colleagues to reach out to the Paralysis Resource Center to 
learn of the important work that they are doing for vulnerable 
constituents in their districts. If you do, you can see that the PRC is 
so much more than a line item in a budget. It is more than dollars and 
cents. It is more than just another program.
  The value of these programs can only be appreciated when you learn 
the stories of the thousands of Americans that the PRC has helped with 
their services. Tonight, I would like to tell some of those stories. It 
is through these stories that we can see the amazing work of the 
Paralysis Resource Center, the lasting legacy of Christopher and Dana 
Reeve, and the bright future of so many who have been served through 
the PRC's programs.
  You will notice that, throughout these stories, you hear the same 
names pop up again and again. That is because the PRC builds community 
and it builds connections.
  When a spinal cord injury leaves Americans with no place else to 
turn, the PRC steps in to help guide the way; and, in return, many of 
those who have benefited from PRC turn back and look to help others 
with spinal cord injuries, to support their journey of recovery and 
rehabilitation.
  Mr. Speaker, in order to move forward and to tell these stories, I 
would like to start by yielding to the gentleman from Rhode Island (Mr. 
Langevin), my friend, who will share some thoughts with us now.
  Mr. LANGEVIN. Mr. Speaker, I want to begin by thanking the gentleman 
from Florida (Mr. Deutch), my colleague, for yielding. It is an honor 
to join him this evening to discuss the cause and mission that is very 
close to my heart.
  As many of my colleagues know, I was injured back in 1980, as a young 
police cadet, when I was accidentally shot and paralyzed in the police 
locker room when a police officer's gun accidentally discharged. So, 
the cause of finding a cure and better treatments for spinal cord 
injuries and supporting family members as caregivers of people with 
spinal cord injuries has, again, been a passion of mine and mission for 
many years.
  In late 2001, it was my privilege to join Christopher and Dana Reeve, 
two very dear friends of mine whom I got to know very well over the 
years, in announcing the creation of the Paralysis Resource Center, or 
the PRC, which was officially established in 2002 as part of the 
Christopher and Dana Reeve Foundation. These were two remarkable 
individuals, as I said, I got to know and who became friends of mine 
over the years.
  I can remember back when Christopher Reeve was paralyzed in his horse 
riding accident and how, instead of being quiet and introverted and 
just dealing with his recovery, he made it his mission to call 
attention to the cause of spinal cord injuries and the need for further 
research to be done and support services to be provided. He was an 
amazing inspiration to me because he gave voice and was a face of 
spinal cord injuries and the work that needed to be done to find a 
cure.

  Because of his work and that of the Christopher and Dana Reeve 
Foundation, we are getting closer and closer every day to finding a 
cure for spinal cord injuries; and we are getting closer and closer 
every day to providing support for better quality of life for people 
with disabilities and paralysis and further support for the families of 
those who care for people with disabilities, especially those with 
spinal cord injuries.
  In 2009, I was so proud to support the enactment of the Christopher 
and Dana Reeve Paralysis Act, which formally authorized some of the 
programs that have led to the success of the PRC. This center has grown 
to include a network of information specialists, a number of veterans 
programs, a Peer and Family Support Program, a substantial Quality of 
Life Grants Program, and a neurorecovery rehabilitation network.
  It really is an inclusive center. It conveys the message that people 
dealing with spinal cord injuries or nerve-related conditions are not 
alone, that there are people and organizations around them who care and 
are willing to give the advice and counsel support that they need. So 
whether you are living with paralysis or you are the caregiver of a 
loved one who is paralyzed, the PRC provides resources and information 
to help serve the specific needs of those affected by spinal cord 
injuries.
  We know there are more than 43 million caregivers in the U.S. 
providing support to loved ones with chronic disabling conditions on a 
variety of disabilities, whether it is a sick child or a

[[Page H6208]]

sick parent or, in particular, those living with spinal cord injuries 
and paralysis.
  Reports estimate that the annual economic value, if we had to put a 
price tag on this uncompensated care of family caregivers, to be 
somewhere approximately at the level of $470 billion annually--$470 
billion annually, if we had to put a dollar figure on this 
uncompensated care. That is more than the total Medicaid spending was 
in 2013. That is when this study was done and those statistics were 
made public.
  The benefits of family caregiving, of course, are plentiful and it is 
what families do for one another. If you have a sick child or a sick 
parent or a loved one, families so often step up to the plate and they 
provide that uncompensated care. Again, it is what families do. But, at 
the same time, it can also take an emotional, mental, and physical 
toll.

                              {time}  2030

  As a result, respite is the most frequently requested support service 
among family caregivers. Respite is that little bit of assistance where 
you have someone coming in to give the caregiver a break during the 
course of a week. Maybe it is an hour or two a day or a few hours 
during the course of a week that can make all the difference in 
allowing the caregiver themselves to go to the doctor or go do their 
grocery shopping, the things that are important to the rest of the 
family, or bringing a child to a baseball game or soccer practice; 
again, just those little everyday things that maybe we often take for 
granted that a family caregiver may not be able to do but for the fact 
that they have respite coming in. As a result, respite is, again, the 
most frequently requested support services among family caregivers.
  Supported by the Christopher and Dana Reeve Foundation, the Lifespan 
Respite Care Program, which I helped to create back in 1996 with then-
Congressman Mike Ferguson, a Republican from Pennsylvania, it was a 
bipartisan effort in creating this program, which operates now in 35 
States and the District of Columbia, complements the PRC's efforts to 
help paralyzed individuals achieve a high quality of life by ensuring 
that caregivers who help them also receive relief and care, again, and 
support themselves.
  Access to respite services has been shown to promote caregiver health 
and well-being, promote family stability, reduce the likelihood of 
abuse and neglect, and delay or even avoid the need for admission to 
costlier, long-term institutional settings, resulting in significant 
savings for the healthcare system and ultimately taxpayers, but 
ultimately helping the loved one who needs the care receive better 
care, because the loved one providing the care gets the support and the 
break that they need.
  So beyond supporting access to respite for caregivers, we know the 
PRC's services and programs have touched the lives of people across the 
country, including those residing in the Ocean State, where I am from 
in Rhode Island.
  For instance, Sarah Galli of Rhode Island spoke about her brother, 
Jeff, who was injured in 1998, and I would like to share her impactful 
words on the importance of the PRC now. She wrote:
  ``July 4, 1998, was the day that my family changed forever. My 
healthy, strong, athletic 17-year-old brother dove into the shallow end 
of a swimming pool and was rendered a high-level quadriplegic.
  ``Each Independence Day that followed has been a reminder of how 
quickly and irrevocably Jeff had his physical independence taken from 
him. It is also a reminder of how grateful I am for the support that 
has enveloped my family with care.
  ``I can't speak for my brother's experiences as a quad. That is his 
story to tell. But here is mine. In the years following his accident, I 
have counted on the Paralysis Resource Center and the Reeve Foundation 
for support. I have referred friends and strangers to them who require 
information and advocacy.
  ``And as a theater major in college, I started a student cabaret, 
Born for Broadway, that expanded an annual gala in the years since, 
raising awareness and funds for paralysis organizations, including 
Reeve. And I have also picked up the phone on several occasions to call 
the PRC and cry. Sometimes you just need to know that you are not 
alone.
  ``A friend of mine, Reeve supporter Jeff Ruben, wrote a song about a 
pal who lives with paralysis, using the lyrics, `I believe in 
miracles.'
  ``I don't believe in miracles, but I do believe in Jeff. And I 
believe in Reeve. Do you?''
  Mr. Speaker, we know the PRC's network of support remains strong to 
this day. When another Rhode Islander, 21-year-old Jack Calbi, was 
injured in a mountain bike accident this past April and left paralyzed 
from the chest down, the PRC immediately reached out to Jack's family 
to discuss the array of resources available.
  Nearly 6 million Americans live with paralysis, depend on robust 
services and supports, respite for caregivers that love them, and a 
continued investment in the science and innovation that will lead to 
the treatments and cures of tomorrow.
  The PRC has become a beacon of hope for so many. And as my dear 
friend Christopher Reeve said, ``Once you choose hope, anything is 
possible.''
  Christopher and Dana Reeve were friends of mine. I miss them dearly. 
They truly did provide hope to me and millions of others, whether 
affected by paralysis or some other nerve disorder or disabilities in 
general, or the families that are affected by this condition as well. 
They made a difference, as has the PRC. I am grateful for their work 
and I am grateful for all the efforts to keep the PRC going strong so 
that they can continue to help those living with paralysis, their 
families, and for those who may be affected in the future.
  And together I know that one day, because of all the efforts that are 
going on through amazing research right now, as we get closer step by 
step every day to finding a cure for spinal cord injuries, that 
families will know that they are not alone, that we are in this 
together, and that PRC and the Christopher and Dana Reeve Foundation 
are helping us to one day get one step closer to finding the cures and 
those treatments that we so desperately look for.
  Mr. Speaker, I thank my colleague from Florida for raising attention 
to this issue and for yielding to me.
  Mr. DEUTCH. Mr. Speaker, I thank my friend from Rhode Island, 
Representative Langevin. I thank him for his leadership here in the 
House on these important issues.
  But just as you spoke about your friends Christopher and Dana Reeve 
and talked specifically about how Christopher Reeve was not quiet and 
introverted, that he was an inspiration to you, I think it is fair to 
say, and I am comfortable actually speaking in this one instance on 
behalf of my colleagues here in the House in saying that just as 
Christopher Reeve was an incredible leader and an inspiration to you, 
so, too, Representative Langevin, are you an inspiration to all of us 
in the House. I thank you for participating tonight.

  There are so many other stories to tell. Representative Langevin 
shared some. I would like to share just a few others.
  One is the story of Eric LeGrand. On October 16, 2010, Rutgers 
University football star Eric LeGrand sustained a spinal cord injury at 
his C3 and C4 vertebrae.
  After a kickoff in the fourth quarter against Army, Eric sprinted 
down the field and he made the tackle, but after the collision, he 
stayed down on the field at MetLife Stadium. Eric was paralyzed from 
the neck down, and doctors gave him a zero to 5 percent chance of 
regaining neurologic function.
  From the moment he was injured, the Paralysis Resource Center was by 
Eric's side with a wealth of services and support. To conquer the 
immediate challenges of paralysis, his mother, Karen LeGrand, spoke 
regularly with the PRC's information specialists, who provided a 
roadmap of the resources that helped Eric transition to the Kessler 
Institute for Rehabilitation in West Orange, New Jersey. At that point, 
Eric was already exceeding expectations for his recovery and was weaned 
off of his ventilator and his feeding tube.
  To help his family understand the long-term realities of a spinal 
cord injury, Eric and Karen were put in touch with Alan Brown, a dear 
friend of mine I will speak more about in a bit. Alan is a certified 
peer mentor and staff

[[Page H6209]]

member of the Reeve Foundation, and he offered advice from his own 
personal experience living with quadriplegia for over 25 years.
  Eric was also enrolled in the Reeve Foundation's NeuroRecovery 
Network, the NRN. The NRN is a growing network of rehabilitation 
centers that develop and provide cutting-edge therapies, like Locomotor 
Training.
  Thanks to the NRN therapies and Eric's determination, he recovered 
the ability to move his neck and his shoulders. He has also improved 
trunk, cardiovascular, and pulmonary control.
  His quality of life, well-being, and health have dramatically 
improved through the efforts of the PRC.
  To pay forward his gratitude and help others, Eric founded Team 
LeGrand of the Christopher and Dana Reeve Foundation to speed the 
development of treatments for spinal cord injury. Since its inception 
in September 2013, Team LeGrand has raised close to $1 million.
  Karen LeGrand was also inspired by her experience with the PRC, and 
became a certified peer mentor to offer guidance and support to parents 
who have children living with paralysis.
  Elizabeth Forst is someone else whose story we should focus on. An 
avid traveler and diver, Elizabeth ``E.B.'' Forst's life changed in 
2014 when a dive into a swimming pool resulted in a C4-C5 spinal cord 
injury.
  In the aftermath of her injury, Elizabeth's family struggled with how 
to move forward and to ensure that Elizabeth could still live life to 
the fullest.
  Her older brother, Tracy, reached out to the Reeve Foundation to tap 
into the constellation of programs and resources offered by the 
Paralysis Resource Center. He spoke with information specialists to get 
a better understanding of his sister's condition and how his family 
could help her adapt physically, emotionally, and socially to living 
with a spinal cord injury.
  Tracy also regularly referred to the Reeve Foundation's website to 
educate himself on life after paralysis from both Elizabeth's 
perspective and his role as her family member and caregiver.
  Thankful for the support she received from the Paralysis Resource 
Center, Elizabeth became a trained and certified peer mentor to help 
fellow paralysis community members find beauty and joy after a life-
changing injury.
  She has also resumed her passion for diving and traveling, as well as 
blogging for the Reeve Foundation to share her tips for traveling with 
a disability. E.B. has said she still has a lot of travel destinations 
on her list, and the PRC is surrounding her with support to make sure 
she can continue to travel the world.
  Denna Laing is someone else we should think about tonight. On 
December 31, 2015, Denna Laing, a standout hockey player for the NWHL 
Boston Pride, was playing in the Women's Winter Classic at Gillette 
Stadium when she crashed headfirst into the boards and sustained a 
spinal cord injury at her C5 vertebra.
  While she was in the hospital, the Reeve Foundation mobilized a 
network of support through the Paralysis Resource Center to help her 
family understand the short-term and the long-term challenges of living 
with paralysis.
  They spoke with information specialists who provided tailored 
assistance on transitioning Denna from the hospital to acute care, and 
then adjusting to life back in her community.
  Denna and her family connected with certified peer mentors like Alan 
Brown, who offered support and guidance based on their own personal 
experiences.
  She is currently building up her strength and working to improve her 
health by participating in a comprehensive therapy regime at Journey 
Forward in Canton, Massachusetts, which is part of the Reeve 
Foundation's NeuroRecovery Network.

                              {time}  2045

  Denna recently tackled the Boston Marathon with help from former NHL 
player Bobby Carpenter, who pushed her racing wheelchair to the finish 
line.
  Known for her vibrant personality, she credits the support she 
received from the Reeve Foundation and paralysis community as the 
reason that she keeps smiling. In her words: ``I know the best of my 
life has yet to come.''
  J.D. Bruning and Kelly Lamb are from Arkansas. After graduating from 
the University of Arkansas, J.D. was enjoying the warm weather with his 
friends when they decided to take a float trip on a local river. Near 
the end of the float trip, J.D. dove into what he thought was deep 
water, but it was too shallow, and he sustained a high-level spinal 
cord injury.
  Since that life-changing moment over 4 years ago, J.D. and his family 
have tapped into the wealth of resources provided by the Reeve 
Foundation Paralysis Resource Center to help J.D. live a full and 
active life in his community.
  Given the scarcity of resources for the paralysis community in 
Arkansas, the PRC was critical in establishing the best possible care 
for J.D. and helping to navigate the path forward for his family.
  His girlfriend, Kelly Lamb, was so inspired by the Reeve Foundation's 
programs and mission that she ran both the Chicago and New York City 
Marathons in 2016, under the Team Reeve banner, and raised over $20,000 
to accelerate innovative research.
  Kelly has cited the Paralysis Resource Center as a lifeline for 
thousands of families impacted by paralysis in the State of Arkansas 
and across the Nation.
  Sabrina Cohen is from Florida. Born and raised in Miami Beach, 
Sabrina sustained a C3-5 spinal cord injury in 1992, when a teenager 
driver, who promised to give Sabrina a ride to a party, started drag 
racing and, unfortunately, slammed into a tree. She was 14 years old, 
and her life was changed forever.
  When Sabrina was first injured, there was no centralized resource to 
learn how to live with paralysis or connect with fellow community 
members.
  When the Reeve Foundation Paralysis Resource Center was founded in 
2002, it became and since remains a lifesaving resource for 5.4 million 
Americans living with paralysis from spinal cord injury, ALS, MS, spina 
bifida, stroke, and cerebral palsy.
  However, physical barriers still existed in Sabrina's community as 
there was no beach in the Miami Beach area that was accessible to 
wheelchair users. Through the Sabrina Cohen Foundation, she applied for 
a Reeve Foundation Quality of Life Grant to fund her dream of a fully 
accessible beach and playground for the disabled, including seniors, 
veterans, and children with special needs.
  The Quality of Life Grants Program is funded through the Paralysis 
Resource Center and awards financial support to nonprofits that foster 
greater health, quality of life, community involvement, and 
independence for individuals living with paralysis and their 
caregivers.
  She made the most of a Quality of Life Grant to establish Miami 
Beach's first-ever dedicated public beach with improved wheelchair 
access and outdoor adaptive fitness and watersport activities.
  Finally, I would like to talk about two other people, both also from 
Florida, and both good friends of mine.
  Alan Brown, I mentioned earlier. He is a resident of Aventura, 
Florida, who was injured in 1988, at the age of 20, when his neck was 
crushed by an ocean wave while on vacation in the Caribbean. The 
accident caused a C5-6 spinal cord injury and left Alan a quadriplegic 
with no movement below his chest.
  For nearly 30 years since the accident, Alan and his family have, 
through the Alan T. Brown Foundation to Cure Paralysis, provided 
support, education, and advocacy for the paralysis community.
  Initially, the focus for the foundation was on finding a cure for 
paralysis, a magic bullet that would help everyone living with 
paralysis to walk again. But after years in a wheelchair, and the 
difficult challenges to overall health and emotional well-being that 
paralysis presents, he and his family decided to overhaul the mission 
of the foundation.
  Today, they focus on improving the lives of people living with 
paralysis through peer mentoring, outreach, and fundraising to help 
others with basic needs like wheelchairs and ongoing medical care. And 
now, Alan and his foundation have partnered with the Reeve Foundation 
to extend the reach and impact of his message to the paralysis 
community.

[[Page H6210]]

  Alan travels the country on behalf of the Reeve Foundation to 
advocate, to increase awareness, and to make an impact on the quality 
of life of other people living with paralysis and their families.
  He currently serves as manager of public impact at the Christopher & 
Dana Reeve Foundation, and in this role, he focuses on extending the 
reach of the foundation's impact on the greater public, creating new 
opportunities for partnership with peer organizations, increasing the 
visibility of PRC and other Reeve Foundation programs, bolstering 
fundraising efforts, and developing the national Peer & Family Support 
Program.
  I have been with Alan and been inspired by him on a regular basis, 
close up, and the work that he does in the paralysis community and for 
those who are experiencing paralysis firsthand. The work that he does 
at those early moments is extraordinary.
  Finally, Shawn Friedkin, who is from my community in south Florida. 
In March of 1992, Shawn was injured in a motor vehicle accident 2 weeks 
before his 27th birthday. He was married with one child, and he spent 
much of the early years following his injury working to increase 
medical research funding for spinal cord injuries.
  For his efforts, he was invited to the White House to meet with 
Hillary Clinton, then-First Lady, as part of her healthcare initiative.
  Shawn testified before Congress on the need for an increase in 
research funding. And based on his desire to help others in the 
community, Shawn left his career in finance, where he worked as a hedge 
fund manager, to create Stand Among Friends in 1997.

  Stand Among Friends, based in Boca Raton, Florida, is a cross-
disability advocacy organization. It is focused on helping people with 
disabilities find employment through vocational training and adaptive 
technology. It has provided services to more than 4,000 people and 
helped over 1,000 people find employment. Shawn has grown the services 
and mission to become one of the top disability service providers in 
the State of Florida.
  And each year, Shawn and the Stand Among Friends organization hosts 
the ``emb(race).'' The emb(race) is a day of diversity awareness that 
includes a half marathon, a 5K, and a family fun walk; and it is, 
indeed, a way for all of us to embrace one another.
  Shawn, as I said, is a dear friend and an inspiration in his 
community and to all who know him.
  Mr. Speaker, in closing, I would like to thank all of those who make 
the Paralysis Resource Center at the Christopher & Dana Reeve 
Foundation what it is today.
  As you can see from these stories, the PRC comes in at a family's 
most vulnerable moment. These are the most serious injuries and 
illnesses one can imagine. They are life-changing, and they come in 
with an immediate response to help guide families who are hurting to 
help them create a positive vision of a new life and build a community 
of support for Americans living with paralysis.
  I would like to leave with the words of Christopher Reeve. He said: 
``I think a hero is an ordinary individual who finds strength to 
persevere and endure in spite of overwhelming obstacles.''
  Tonight, Mr. Speaker, I would urge my colleagues to join me in 
supporting the Paralysis Resource Center in their work to help empower 
more American heroes in the fight against spinal cord injuries.
  Mr. Speaker, I yield back the balance of my time.

                          ____________________