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…
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. 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
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.
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.
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.