Welcome to the Opinsky's Fundraising Page
It’s hard to believe that we organized our first Strollathon in 2008, when Lilly was 8 years old, and just last Spring she wore a cap and gown at her high school graduation. Words can’t express our gratitude for all the love and support you have given Lilly and our entire family over the years. But there’s still no cure and research is very expensive. We are chairing the 12th annual St. Louis Rett Syndrome Strollathon again this year and would love your support. Dig out those snazzy blue Lilly’s Friends shirts and join us at the JCC – Creve Coeur on Saturday, May 4. We know it is hard to make it every year and we appreciate all the efforts to help us in any way you can. We would love to see everyone, from near and far, to make it for the 2019 Stroll! There is no cost to stroll with us and there will be free snacks and kid’s activities. Fredbird will also be returning for pictures and fun. Registration begins at 9 am and we stroll at 10 am.
This event, like 30 other Strollathons across the country, raises critical funds for research in finding treatments and (fingers crossed) a cure for Rett syndrome. Our hope for the current research and success of new clinical trials remains high with the drug Trofinetide being the first drug for Rett Syndrome to enter Phase 3 Clinic Trials. Rett Syndrome is also a major focus of several research labs that focus on gene therapy as our Rett mouse model and NIH longitudinal data is rich with data for use by the researchers. We are so grateful to have a Rett Syndrome clinic right here in St. Louis at Children’s Hospital that helps families of all ages get the highest quality care.
Donations for Joyce Opinsky
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