Erin Trainor Memorial Fund
“For more than ten years, the Erin Trainor Memorial Fund had an immeasurable impact bringing newly diagnosed families to the Annual SMA conference. We still hold true to our original commitment to help make a difference to families diagnosed with spinal muscular atrophy (SMA). For parents who receive a diagnosis today, several therapies offer a pathway to early treatment. Their outcomes are hopeful, and we are making a renewed commitment to ensure they stay that way. Beginning in 2022, the ETMF commit its resources to help increase the Care Center Network of Cure SMA. This network will give patients with SMA the best care possible.”
– Gene Trainor
About the Erin Trainor Memorial Fund
In February 1994, Barbara and Gene Trainor lost their five-month-old daughter, Erin, to SMA Type 1. Since then, the Trainor family, friends, and colleagues have raised millions of dollars for Cure SMA through annual events such as the Chesapeake Crab Feast and the Chesapeake Charity Golf Classic. In addition, they have provided comfort to numerous families by forming the Cure SMA Chesapeake Chapter in Baltimore, Md. The ETMF is in honor of their daughter’s memory and seeks to strengthening the SMA community.
2025 Initiative Recap
Over the past several years, incredible advances in SMA treatments have transformed lives. With early diagnosis through newborn screening and access to life-changing therapies, many individuals with SMA are walking, sitting independently, and living longer.
As outcomes improve, having access to local, high-quality care is more important than ever. Cure SMA is building a network of treatment and care centers to give individuals with SMA access to therapies and support that help them live more independently.
The Erin Trainor Memorial Fund supports the opening and maintenance of these centers, ensuring families have access to comprehensive care close to home and honoring Erin’s legacy.
The fund also supports the Adult & Pediatric Neuromuscular Clinical Research (APNCR) network, which develops outcome measures, conducts clinical trials, and evaluates the impact of approved SMA treatments. Specifically, the fund helps bring new and adult-focused treatment and care hospitals into the APNCR network, strengthening clinical expertise and expanding access to care across the country.
With your support, we can continue to expand this vital network and provide the resources needed for every individual impacted by SMA to thrive.
For more information or to inquire about making a gift to support the ETMF, please contact [email protected].