We were told there was nothing we could do about it.
As parents, that was a heart-wrenching diagnosis. We felt hopeless and helpless at the same time. After processing the news for a bit, the pain turned to the feeling that we needed to do something: we needed to take action. And that’s what led us to form our non-profit: A Race Against Blindness.
Undeterred by the odds against us, we set out to find a cure.
We set out to connect with researchers, trying to find out – is anyone working on this? Is anybody making headway on the problem of retinitis pigmentosa caused by Bardet-Biedl syndrome? Now we have connected with leading researchers and clinicians in the US and UK who are doing ground breaking research for BBS and retinitis pigmentosa.
We Have A Plan
In a short period of time, we went from having no hope for treatment for our son’s condition to the prospect of sight-saving therapy for him and thousands of children all over the world. We have a plan. We have something we’re working towards, and this is a potential therapy. Our non-profit went from having a dream to the reality of being able to help fund sight-saving therapy. We’ve been moving so fast to get to this place, with all our efforts focused on maximizing available funding for clinical trials.
Our Fundraising Goals
With your help, we’re on the cusp of being able to potentially save the sight of children suffering from RP/BBS1. 1 million dollars is our first major fundraising milestone as a nonprofit which will be able to make an immediate impact on the ability to begin a potential clinical trial.