Benevento Boys' Fund
Funding the way to a cure
The Benevento family began a fundraiser recently that has stretched into VOC Fundraising month. Both of their boys were born with oculocutaneous albinism (OCA), and were recently able to participate in Dr. Struck's clinical trial. While participating in the trial, Stephen and Joseph both experienced a remarkable improvement in their vision, but had to cease the medication at the end of the trial.
“Sadly, they had to stop taking the medication because the study is not published yet. The drug is not FDA approved for this purpose. The study will not be published until there are more participants and a trend or pattern can be established. The problem is, this study is not funded. We paid out of pocket, almost $10,000 total. Other families would love to participate but can not shoulder the financial burden. ”
For this reason, Tarsha and her family started a fundraiser to help other families touched by OCA participate in this clinical trial. Their goal was $5,000, and they've already raised over $3,300. Check out their GoFundMe, and join the cause by donating or sharing with your friends on facebook.
Hope is in Sight!