WELCOME TO THE
Cure Blau Syndrome Foundation
The Cure Blau Syndrome Foundation is a network of parents, patients and collaborating scientists and doctors. We aim to:
1) fundraise and foster steps toward a cure and effective treatment options,
2) increase awareness among medical professionals and scientists and 3) provide education and advocacy opportunities for our Blau Syndrome community.
THE FUTURE OF BLAU SYNDROME DEPENDS ON YOU.
Blau syndrome is a rare degenerative and life-threatening disease that robs those affected of their vision, mobility and in some cases their life.
Lexi was the original inspiration and founder of the Cure Blau Foundation. We ran out of time before we could find a cure for Lexi, but we carry on in her legacy for those who continue their battles with Blau.
There is currently no effective treatment for Blau. While our ultimate goal is a gene therapy and cure for Blau syndrome, we are exploring all options for an effective treatment.
Every dollar matters. Every hour matters. Every voice matters. We all have the potential to help change the lives of those affected by Blau syndrome. Your donation of funds or volunteer hours can help us make medical history. Even just sharing our story will make a big difference.
Help us turn hope into action to find a cure for this horrible disease.
Troy Townsin, Founder
When our daughter Lexi was born we could never have imagined the journey we were about to undertake. This is our story about how we came to be medical researchers heading a non-profit organization focused on curing a rare genetic syndrome we had never even heard of.
With the advent of meaningful genetic therapies and increase interest in the genetic etiology of Blau Syndrome, it is our family's hope that an actual cure may be on the horizon-- one that would help her live a hospital, pain, and treatment-free life. We would love for you to partner with us on this journey!