The Siegel Rare Neuroimmune Association (SRNA) was proud to be an exhibitor at the 2020 Reeve Summit in Washington, D.C. on February 26th-29th. SRNA staff members GG deFiebre, Krissy Dilger, and Chitra Krishnan attended the Summit, which was hosted by the Christopher and Dana Reeve Foundation. The goal of the Summit was to “bring together the paralysis community, key thought leaders, and individuals who have had an extraordinary impact on the lives of people with paralysis and related disabilities.” Throughout the event, SRNA made meaningful connections with medical professionals, individuals who are diagnosed and their caregivers, and advocates of people with disabilities.
One of the important highlights of the event was the need for better laws and regulations surrounding disability rights, such as workplace accommodations, healthcare, benefits, and accessibility. A panel on “Tools for Navigating Employment and Benefits” taught us about the work of the National Disability Rights Network, the U.S. Department of Labor’s Office of Disability Employment Policy, and the National Council on Independent Living. One takeaway point of the discussion was that disability benefits are a snapshot in time and can change depending on the individual’s needs. Another takeaway was that employment can be an empowering tool for people with disabilities, but it can be difficult to obtain without losing benefits; however, there are programs and resources for navigating employment without immediately losing benefits. By attending the session, we learned new tools to help our community navigate these challenges, and we hope to cover these topics further in future “Ask the Expert” podcasts.
Senator Tom Harkin gave the keynote address during lunch on the second day of the Summit. Senator Harkin served in the U.S. Senate beginning in 1984 and retired in 2015. Throughout his tenure, he championed the cause of disability rights and changed the lives of people with disabilities in the U.S. by taking a key role in crafting the Americans with Disabilities Act (ADA). During Senator Harkin’s speech, he emphasized, “While a cure is important, we need to keep the promises of the ADA to those living with disabilities.” Senator Harkin encouraged everyone to take an active role in advocating for disability rights, starting with voting for candidates who can effect change for people with disabilities on the local, state, and federal levels.
Another important takeaway from the Summit was the Reeve Foundation’s explanation of their Quality of Life grants. SRNA is thankful to be a recipient of this grant for our 2019 Family Camp, which took place in July of last year. Through the Quality of Life grant, we were able to apply $25,000 toward allowing thirty-four families to experience the joys of summer camp and learn from experts in the rare neuroimmune disorders. During the Reeve Summit, we learned about the process of applying for the grant and how best to report outcomes from the project. We hope to be a recipient of the Quality of Life grant in the future.
Finally, an important part of the Summit was hearing the stories of the attendees whose lives have been impacted by disabilities. Cody Unser was diagnosed with transverse myelitis at eleven years old and has been paralyzed ever since. During the Summit, she spoke about her decision to start the Cody Unser First Step Foundation to raise funds for research, public awareness, and quality of life for those with spinal cord-related paralysis. Cody chose to start with scuba diving, and through her foundation, she has helped countless people with spinal cord injuries enjoy the sport of scuba diving. On the second day of the Summit, keynote speaker Robin Roberts of Good Morning America allowed attendees throughout the room to share their stories. We heard stories from people whose lives have been affected by paralysis, and we learned about the challenges they continue to overcome. It was an enlightening moment that highlighted the power of sharing stories to facilitate understanding of the disability community’s needs.
Altogether, the Reeve Summit was a unique experience, bringing together members of the disability community to learn from each other and work toward common goals. SRNA hopes to partner with the Christopher and Dana Reeve Foundation for future projects that will benefit individuals with rare neuroimmune disorders.