Dear Friends and Family,
When our oldest son, Taylor, was diagnosed at age 2 with Fragile X, the most common inherited cause of mental impairment and autism, brain research suddenly became deeply personal to our family. We were devastated, but worse, we felt powerless. Eventually we managed to turn our pain into passion for research, with the intention of doing our part to help speed up the pace of scientific progress.
As a severely affected 23 year old, Taylor continues to struggle with very basic life skills including speech, self-care and safety concerns. He is happy and safe, thanks to The Center for Discovery where he lives and works on the farm. Daily life consists of typical farm chores — collecting eggs, picking apples, feeding the pigs, and fishing in his free time. Many families though don’t have good adult living options for their loved ones and struggle daily to care for them at home. You can help to make mental impairment a treatable disorder rather than a hopeless diagnosis. Every dollar donated to FRAXA helps to advance cutting-edge research that could make a miraculous difference for people living with cognitive impairment.
FRAXA Research Foundation funds research worldwide to find treatments and ultimately a cure for Fragile X. Since 1994, this parent-run foundation has been instrumental in advancing cutting-edge and groundbreaking work. FRAXA-funded work has led to a pipeline full of available and investigational new drugs that now need to be tested in clinical trials. This is the very real path that could lead to treatments, and this truly gives families like ours hope.
Scientific progress takes time and research is expensive. The human brain is fascinating but incredibly complex. Growing public interest in unraveling its mysteries will help to bring much needed funding to neuroscience. Consider these recent statistics that highlight the impending health care and community crisis we all might be facing:
- In the US in 2018, 1 in every 59 children was diagnosed as being on the autism spectrum.
- Each day 45,000 to 50,000 people with autism turn 18, and some, like our son, will require a lifetime of care.
- By 2020, 1 million Americans over 45 will be diagnosed with Parkinson’s, increasing to 1.24 million by 2030.
- 5.8 million Americans are living with Alzheimer’s, increasing to 14 million by 2050.
- 1 in 6 people around the world suffers from a brain-related disease.
As a single gene disorder, Fragile X is an ideal laboratory model for studying the brain, and this work could lead to valuable insight into many other disorders with crossover symptoms.
FRAXA Needs Your Help
Staying true to the low overhead nature of FRAXA, this annual letter has become our “Big Event” since 2007, as well as FRAXA’s single largest fundraiser. As one of the most efficient and effective charities in the world with administrative costs less than 4% of total budget, top non-profit ratings agencies all give FRAXA the highest marks. For information or to make an online donation please visit www.fraxa.org and PLEASE consider giving generously.
Jeffrey and Debbie Stevenson