The RYR-1 Foundation is excited to highlight a successful fundraiser hosted and led by the Woomer family of Lexington, Kentucky, Maisie Woomer and her family launched the Miles for Maisie Campaign to help raise awareness and gain support for those affected by RYR-1-related disease (RYR-1-RD).
The RYR-1 Foundation is excited to highlight a successful fundraiser hosted and led by the Woomer family of Lexington, Kentucky. Maisie Woomer and her family launched the Miles for Maisie Campaign to help raise awareness and gain support for those affected by RYR-1-related disease (RYR-1-RD).
Maisie was born in the summer of 2022 with a RYR-1-RD. Her muscles may be weak, but her motivation and drive to gain strength is strong. Her resilience has been inspiring.
On July 4, 2023, the Woomer family participated in the “Bluegrass 10,000,” a 10 kilometer race in Lexington, Kentucky. People walked, ran, and, in Maisie’s case, strolled miles to raise funds for The RYR-1 Foundation, Maisie’s father, Adam, challenged himself to surpass as many runners as he could catch with Maisie in tow. Out of 1988 runners, he passed 1705 runners in total!
The Woomer family raised close to $50,000 for The RYR-1 Foundation; these donations will have a significant impact on the ongoing work of the organization. The RYR-1 Foundation is extremely grateful to the Woomer family for raising this amount of funds on its behalf.
To learn more about Maisie’s story, please review the article highlighting the Woomer family by UKnow University of Kentucky News where Maisie is being treated. The article can be viewed HERE. The Woomer family also was featured on WKYT, the local Lexington, KY news station which can be watched HERE.
If you would like to host a fundraiser for The RYR-1 Foundation, please click HERE for more information. If you would like to make a donation to The RYR-1 Foundation, please click HERE.
“After receiving Maisie’s diagnosis last summer, Adam and I desperately began researching,” Courtney Woomer (Maisie’s mom) said. “Sadly, after discovering there is no current treatment or cure, we felt the most valuable use of our resources would be to aid the efforts of The RYR-1 Foundation. As we, those affected by RYR-1 disease in some form or fashion know, many have never heard of RYR-1. “Strength in Numbers” has to be not only The RYR-1 Foundation’s slogan but all in our community’s motto; the more awareness raised, the more hope there is for the futures of Maisie and many others. We’re very touched and grateful for the generosity of our family, friends and even strangers who donated during our Miles for Maisie campaign. Maisie is such a light in our lives; she inspires us everyday.”
“While the Woomer family pressed on towards the finish line of their race, their work helps get all of us in the RYR-1 community one step closer to the finish line of finding a cure or effective treatment,” said The RYR-1 Foundation. “On behalf of the entire RYR-1 community, we are grateful for the Woomer family’s selflessness and generosity.”
The Pittsburgh, Pennsylvania-based 501(c)(3) public charity was launched in October 2014 by members of the Goldberg family, who have been affected by an RYR-1-related disease (RYR-1-RD). It is currently the only organization that exists solely to advocate for and serve the needs of patients with RYR-1-RD, the most common cause of congenital myopathy. The mission of The RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1-RD, to educate physicians about these diseases, and to provide patient/family support and advocacy. To learn more about The RYR-1 Foundation, please go to www.ryr1.org.
