SRNA Receives 2024 Quality of Life Grant From Christopher & Dana Reeve Foundation

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The Siegel Rare Neuroimmune Association (SRNA) is proud to announce that it has been awarded a 2024 Quality of Life Grant as part of the Christopher & Dana Reeve Foundation National Paralysis Resource Center 2023 Direct Effect 2nd Cycle Quality of Life grants. Fifty-nine grants totaling $1,271,125 were awarded. The Quality of Life Grants Program supports nonprofit organizations that empower individuals living with paralysis. Since the Program’s inception, more than 3,770 grants totaling $43 million have been awarded. Funding for this program was made possible through a cooperative agreement with the Administration for Community Living (ACL grant #90PRRC0006-03-01).

The National Paralysis Resource Center has several grants in different category areas under the Quality of Life Grants Program. The Direct Effect Quality of Life Grants program funds organizations to support a wide range of projects and activities that will impact individuals living with paralysis and their families. “These awards are about restoring independence to our constituents,” said Dan McNeal, Director of the Quality of Life Grants Program, Christopher & Dana Reeve Foundation. “Our work and number one goal is to enhance the quality of life of people living with paralysis. It is our honor to continue to collaborate with so many dedicated organizations, which have selflessly given their time and efforts to ensure that accessibility and inclusivity remain embedded in the fabric of their programs.”

SRNA will use the grant funding to support the 2024 Quality of Life Family Camp. Every year since 2012, we have hosted a five-day camp for 30 children diagnosed with rare neuroimmune disorders and their families. At camp, children have enjoyed the benefits of a fully accessible camp experience, including activities like horseback riding, fishing, bowling, rock climbing, ziplining, archery, swimming, arts and crafts, cooking, and music. This year from June 29-July 4, 2024, we have partnered with Morgan’s Camp, a fully accessible camp in San Antonio, Texas. The camp experience is an integral tool to empower children and their families and provides them a sense of community among their peers as they develop their identities as individuals and families living with a rare neuroimmune disorder. Camp is free of charge to families.

SRNA is grateful and overwhelmed by the generosity of the Reeve Foundation in recognizing the importance and impact our annual quality of life family camp has for children and their families living with a rare neuroimmune disorder. The grant allows us to continue to connect families experiencing these disorders with each other and to medical providers who know and understand the rarity of their situations. The grant also allows children and families to learn about the latest treatments and research updates, and most importantly, enjoy the unique experience of camp.

Sandy Siegel, President of SRNA shares, “The Foundation has regularly supported our family camps for many years. The benefits our families receive from this experience are exceptional, and we are grateful to the Foundation for helping us to make this happen.”