Dear Friends and Family,
We very much hope this letter finds you and your loved ones healthy and happy. The Stevenson family is thankfully thriving, our young adult children set out to pursue their own hopes and dreams.
The march of time renews the commitment we made to a special needs community 25 years ago. We vowed to dream big and never give up until there were effective treatments available and eventually a cure for Fragile X syndrome, the most commonly inherited cause of intellectual disabilities and autism.
FRAXA Gives Families Hope
Our son, Taylor, was diagnosed with Fragile X when he was just 2 years old. Like most parents, upon receiving this news, we were launched into a place of unimaginable grief. Now, twenty-five years later, Taylor lives at The Center for Discovery near Monticello, NY. He is happy, healthy and busy.
Taylor is much loved, enjoys his home visits, and adores his siblings. Despite numerous challenges, his most significant struggle lies in his inability to communicate effectively, which renders him particularly vulnerable. However, thanks to the groundbreaking efforts of FRAXA Research Foundation, new treatment options are on the horizon.
Founded in 1994, FRAXA has been at the forefront of pioneering brain research, dedicated to developing real-world solutions that will be key to brighter futures for this vulnerable population and all those who care for them. Even the slightest improvement in his function would be incredibly meaningful for our Taylor.
What We’re Excited About
After funding over $34 million in research since 1994, FRAXA continues to collaborate on a staggering number of promising projects. A sampling of some truly exciting work include reactivating the silenced Fragile X gene through a combination of drugs, advancing technologies like gene repair and gene therapy, adapting mRNA vaccine technology to tackle Fragile X, repurposing combinations of existing medications, and conducting ongoing clinical trials for promising new drugs.
As a single gene disorder, Fragile X serves as an ideal laboratory model for studying the brain. The groundbreaking research FRAXA is funding will likely provide insight into other disorders with overlapping symptoms such as autism, Alzheimer’s and Parkinson’s.
FRAXA Needs Your Help
Staying true to FRAXA’s low overhead nature, this annual appeal letter has evolved into our “Big Event” since 2007. Thanks to your past generosity it has in fact become FRAXA’s single largest fundraising event! As one of the most efficient and effective charities in the world, with administrative costs less than 4% of the total budget, top non-profit ratings agencies consistently give FRAXA the highest marks. Every dollar contributed to FRAXA plays a crucial role in advancing cutting-edge research, offering families worldwide, including ours, hope.
We wholeheartedly encourage you to please consider once again giving generously. Your support makes a significant difference in our mission.
Warmly,
Jeffrey and Debbie Stevenson