Personal Fundraisers
Connecticut for USH Fundraiser
Meet the children in Connecticut affected by Usher syndrome! Your donations will be used to find treatments for their vision loss.
Advancing Research. Creating Hope.
Help us bring light to a world growing quieter and darker with each passing day. Usher syndrome is a rare genetic condition that causes combined hearing loss and progressive vision loss, often beginning in childhood or adolescence. It is the leading genetic cause of deaf-blindness worldwide. For individuals and families affected, it means navigating a world where sound fades and sight slowly diminishes.
There is currently no cure.
But there is hope.
Your support fuels critical research aimed at understanding Usher syndrome, developing effective treatments, and ultimately finding a cure. Every dollar raised helps scientists move closer to breakthroughs that can preserve hearing, protect vision, and improve quality of life for those living with this condition.
Funds raised through this initiative directly support:
- Scientific research to better understand the genetic causes of Usher syndrome
- Development of emerging therapies to slow or stop vision loss
- Collaborative efforts between researchers, clinicians, and patient communities
By donating today, you’re not just giving money—you’re giving hope. Hope for earlier diagnoses. Hope for innovative therapies. Your support plays a vital role in turning scientific discovery into real-world impact.
Together, we can drive progress, expand possibilities, and bring hope to individuals and families affected by Usher syndrome. Thank you for supporting life-changing research.
Meet some of the children in Connecticut affected by Usher syndrome!
Your donations will be used to find treatments for their vision loss.
Jack
Jack “Attack” is a bright, joyful five-year-old whose laughter and curiosity light up every room he enters. He was born with hearing loss and will gradually lose his vision, as well. While Jack already faces challenges most children never have to consider, his spirit is fearless. He loves learning, exploring, and discovering the world around him. Each new skill he masters and every new experience he embraces is met with determination and an unmistakable joy for life. Yet as he grows, the world around him will become quieter and darker—not because of who Jack is, but because of the limits imposed by Usher syndrome.
Surrounding Jack is a devoted community of family, friends, and specialists who are committed to helping him thrive today and preparing him for tomorrow. What they—and families like Jack’s—need most is hope: hope that research will lead to treatments that protect his vision, preserve his independence, and expand his future. Your donation helps ensure that Jack and other children like him can continue to learn, dream, and experience the world to its fullest.
HADLEY
Meet Hadley! This beautiful, smart, and playful girl brings light to everyone she meets. She has one of the biggest hearts anyone can have, and her laugh is truly contagious. If you asked her what she loves most her answer would be – family. Despite facing the challenges that come with having a rare genetic disorder, Hadley approaches each day with resilience and learning.
The unknown is every parent’s fear, but her support system is tremendous. She will continue to thrive in the deafblind community while playing and growing like the energetic child she is. We pray one day for a cure through science and faith. We thank you from the bottom of our hearts!
BROOKE
Brooke is notorious for being the happiest girl on the planet! She’s funny, sassy, and has proven since day one that nothing will get in her way. Her favorite things include laughing, her sister, and laughing with her sister.
Brooke received her first pair of hearing aids at four months old, and is thriving! Nothing can stop her from imagining and exploring. There is currently no cure for Usher syndrome, but her world is full of love and learning from gracious family and friends. We pray that through generosity, science, and support, answers will come. Thank you for your donation and for supporting our family!
