Goal: $100,000 • To Date: $68,005
What A Year 2020 Has Been!
We very much hope this finds you and your loved ones safe and well. The COVID-19 outbreak and the corresponding shutdowns have affected us all worldwide, but navigating the current health crisis has been exceptionally difficult for the special needs community. We’ve all found hope watching the scientific community work together to develop a Coronavirus vaccine that could restore health to the world. It’s with the same passion for innovative science that we’re motivated — now more than ever — to support the research that could dramatically improve the lives of those coping with Fragile X, the most common inherited cause of mental impairment and autism.
The Pandemic Scramble
Our 24 year old son, Taylor, was diagnosed at age 2 with Fragile X. Taylor is safe and happy at the residence where he lives, but safety for this vulnerable population has come at a cost. The need for lockdowns and restricted family visits is critical for controlling outbreaks. People with developmental disabilities and autism have a rate of infection from COVID-19 at least 4 times greater than the general population. Once infected, the fatality rate is 13.4% compared to 4.5% for everyone else. Pre-existing conditions, group residential settings, non-resident staffing, sensory issues around wearing masks, and poor communication skills are contributing factors to these stunning statistics.
Though our family has been grateful for the extreme level of caution taken by the residence where he lives, we’re fairly certain Taylor felt abandoned by his family for months at a time. Taylor absolutely melted our hearts with his ear-to-ear smiles of sheer joy the few times we’ve been able to bring him home since restrictions were eased. The simplest communication such as a phone or FaceTime call could have eased the separation for us all slightly, but these tools are just not within Taylor’s skill set. The possibility of a treatment that could boost his ability to communicate, reduce his debilitating anxiety, or enhance his level of understanding of the world around him, could be life-altering for our family.
FRAXA Gives Families Hope
FRAXA Research Foundation funds research to find treatments and eventually a cure for Fragile X. Since 1994, this parent-run foundation has funded $30 million in research worldwide and has been instrumental in advancing cutting-edge and groundbreaking work. FRAXA-funded work has led to a pipeline full of possible combinations of currently available as well as investigational new drugs that now need to be tested in clinical trials. This is a very real path that could lead to treatments, and this gives families like ours hope. As a single gene disorder, Fragile X is an ideal laboratory model for studying the brain, making it extremely likely that this work could also lead to valuable insight into many other disorders with crossover symptoms such as Alzheimer’s, Autism and Parkinson’s just to name a few.
FRAXA Needs Your Help
Staying true to the low overhead nature of FRAXA, this annual appeal letter has become our ”Big Event” since 2007, and 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 all give FRAXA the highest marks. We encourage you to PLEASE consider once again giving generously.
Jeffrey and Debbie Stevenson