On National Public Radio, there was a story about a foundation started by concerned parents, funding impressive discoveries, results of clinical trials, and the quest for new avenues of research. Nope, not the LuMind Foundation (or even our former name Down Syndrome Research and Treatment Foundation). This is a story about fragile X.
The NPR piece, ‘A Family’s Long Search For Fragile X Drug Finds Frustration, Hope’ highlights the family of a 25-year old man with fragile X. In 1994, his parents helped start the FRAXA Foundation to ignite research into fragile X. Recently, their son participated in a clinical trial that came about in part thanks to a researcher FRAXA had funded.
There are so many similarities between the journey of these parents of a young man with fragile X and our own quest to find drug therapeutics to improve cognition for people with Down syndrome. Change a few words, a few names, and this could be the Down syndrome community or the CF world, or MS or ALS.
This article illustrates the realities of research, the hopes and frustrations and lessons learned from each step in the research and clinical trial process. The positive force achieved from collaboration between the community, researchers, and biopharma companies also mimics our journey and approach.
Perhaps most importantly, this story underscores the importance of funding research because even when there aren’t immediate positive results, what is learned may open the doors to other discoveries.
Thank you for your support of cognition research.