The Haley’s Heroes Foundation exists to find and fund a cure for Batten Disease. Established in honor of one little girl with infantile Batten disease by her parents who are committed to finding a cure to save her life and all those effected by Batten disease. The saying “it takes a village” has never been more true. The Foundation works to build a better future for those who suffer from this rare disease through research and the advancing breakthrough treatments. Please join us on this journey.
Oct 2017, our Haley was diagnosed with Batten Disease, specifically CLN1. Our greatest fear was Haley going blind. Today we would consider that a blessing. Batten Disease is a rare inherited disorder of the nervous system. Today there is no known treatment or cure. Those affected suffer from progressive neurological impairment that leads to blindness, seizures, loss of motors skills, speech, and ultimately life.
She is just 8 years old. Haley lives her life as a song. She dances and sings when others might just watch. Her world is one of glitter, unicorns and magic. Batten Disease will steal that from her. We cannot just stand by and watch the song disappear from her soul.
The saying “it takes a village” has never been more true. We are committed to hope… we are committed to love… we are committed to finding a cure. Please join us on this journey and help us find a solution for not just us but all those families out there coping with this disease.
The cost to research and quickly bring FDA approved clinical trials and gene therapy treatments to children with Batten Disease is high. We need to raise more than $900,000 in 2018 and another $1.5 to $3 million in 2019.
And we need to do it quickly. With a goal of human trial gene replacement therapy in 1-2 years we have no time to spare.
Hops for Hope
Join b2 Taphouse in supporting Haley’s Heroes on May 18th from 4pm – Close!
Included with each ticket purchase is a custom b2 Taphouse pint glass and 3 beers. Minors receive a b2 glass and unlimited soda. 100% of ticket sales and 20% of all additional purchases support the Haley’s Heroes Foundation.
The Rift in Our Reality
The Haley’s Heroes Foundation has partnered with author Amy Proebstel to bring awareness of Batten disease to the general public.