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.
In the past five years, there have been three powerful treatments approved that are making a significant difference for the SMA Community, and currently about 65% of all those with SMA are on one of these treatments. In addition, Newborn Screening for SMA has been implemented in 98% of all births, with the remaining wrapping up in 2023. This means that infants can now be diagnosed with SMA very early before symptoms appear, offering the pathway to early treatment.
All the changes in the disease state are wonderful for people with SMA; many are walking, sitting up, living longer. And as they live longer and more independent lives, they will need access to local care and support to assure a strong quality of life. SMA is NOT yet cured. There is much left to do and care centers are vital for access to care locally.
There are currently 29 local Care Centers in the Cure SMA Network but so many more are needed. In honor of all the things we had hoped for Erin, we are committing to raising $350,000 in order to support the opening of additional multi-disciplinary Care Centers across the country. And we will match every dollar, so Cure SMA will be able to put $700,000 toward this important initiative. Our goals are ambitious, yet critical to make a difference in the lives of children and adults with SMA.
Erin would have been 27 years-old this year. While we still feel the loss, we are so proud of the work that has been done and excited to see new care centers address so many children and adults with their various needs. For parents who receive a diagnosis now, their outcomes are hopeful, and we have made a renewed commitment to ensure they stay that way by increasing the Care Center Network of Cure SMA.
In 2022, we dedicated a total of $700,000 dedicated to the Care Center Network. We still hold true to our original commitment to help make a difference to families diagnosed with SMA. Everything we did with our amazing network of contacts helped make significant differences in treatments approved for SMA and for that we all should be proud. Now we can do the same to ensure rapid local access, and care for all those impacted by SMA. Together with you, our supporters, we can continue to make a difference. Please make your generous gift of support today.
For more information or to inquire about making a gift to support the ETMF, please contact [email protected].