Today, Dan and I took a day off from work. It wasn’t to enjoy the nice weather, but seriously, we are having some amazing weather right now. It was for something much more important than that. Today, we and a group of our peers advocated for Fragile X Syndrome Funding for Research and Programs with members of Congress. Not only that, but we actually had the largest turnout of advocates with 170+ folks covering 42 states. Such an amazing representation for the Fragile X Community!
In Missouri, there are over 30,000 carriers, which I am one of, and 2,000 with Fragile X. Nationwide, there are 1.5 million carriers and 100,000 with Fragile X. These numbers are probably a lot higher as Fragile X is still misdiagnosed as Autism. Fragile X is the most common known single gene cause of Autism Spectrum Disorder.
Our asks today were simple: Join the Fragile X Caucus, Sponsor the STAT Act that will enact policy reforms at the FDA to accelerate development of therapies and facilitate patient access to them (early intervention is key!), support Fragile X research funding with the NIH, CDC and DOD and expand Telehealth services beyond the pandemic. Today, I think we all felt heard. It is our hope that we see change come from these meetings and we look forward to building these relationships with members of Congress as we cannot do this alone.
Now here is some great news…anyone can advocate for Fragile X Syndrome!! Did you know that there are other conditions that can benefit from Fragile X research? Alzheimer’s Disease, Parkinson’s Disease, Down Syndrome, Autism Spectrum Disorders, Cystic Fibrosis, Polycystic Ovarian Syndrome, Epilepsy and ALS. That is a big list!! I bet most of you know someone impacted by one of those conditions. If you are interested in learning more check out Fragilex.org or reach out to me! I would love for you to join us on this journey!!
XOXO
Our Fragile Xperience 