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Dear Friends and Family,
Grant isn’t living the life he – or his parents – imagined when he was a little boy.
At the age of 30, Grant suffers from intellectual disability, hyperactivity and extreme anxiety. He functions at the level of a five-year-old and lives at home with his parents Lauren and Jim. Grant does routine jobs: working at a horse rescue farm, cleaning equipment at a local gym, and making deliveries to various establishments in the community.
Grant has Fragile X syndrome.
Without effective treatment for Fragile X, Grant is regressing, and this terrifies his parents. Daunting fears about his future care when they are gone keep Lauren and Jim in a near-constant state of anguish.
This year, FRAXA-funded researchers have made a transformative discovery that could change the future for Grant and all families impacted by Fragile X. Dr. Joel Richter and Dr. Sneha Shah have uncovered a path to treatment and a vastly different understanding of Fragile X than we believed for the past several decades.
This breakthrough happened because of people like YOU. Your support of FRAXA brings us closer to a solution for Fragile X. Finding effective treatments and ultimately a cure for Fragile X syndrome is FRAXA’s goal, and this simply won’t be possible without you.
We hope you will consider making a gift to FRAXA today to finally make effective, targeted treatments available!
Dr. Richter and Dr. Shah’s discovery points to Antisense Oligonucleotide (ASO) therapy for Fragile X syndrome. ASOs are a revolutionary new approach to treating disorders. Unlike most treatments which target symptoms, this potential ASO therapy targets the root cause of Fragile X syndrome.
And the good news? ASOs are already in clinical trials for other disorders!
Fragile X is inherited; it can devastate entire families. Parents or grandparents of people with Fragile X syndrome can also suffer from associated diseases.
Lauren watched FXTAS (Fragile X-associated Tremor/Ataxia Syndrome) consume her father. Prior to his passing, he suffered with gnawing tremors, balance, and stability issues. Other relatives in Lauren’s family also have Fragile X. Its impact across multiple generations is heartbreaking.
Could ASOs be the breakthrough we’ve been working towards? Because FXTAS is thought to be caused by excessive mRNA, ASOs may also offer promise for that disorder.
Imagine the joy this would bring to families who have multiple generations impacted by Fragile X. It would be life changing.
Funding Fragile X research is an urgent need for families everywhere. You can give families like Lauren’s the peace of mind that with each newly funded research grant, we are one step closer to curing Fragile X.
For parents like Lauren – and for me – this is personal.
Your gift today will fund new research and clinical trials in 2024, so parents like Lauren and Jim see hope in the future, knowing we are that much closer to a cure.
With sincerest thanks for your consideration,
Katie Clapp
President and Co-founder
P.S. With your support we can rewrite the future of Fragile X. We are in a race against time and regression. You can help us win it!
