[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.
____________________