Happening Hero: Blind teenage musician to perform with Miss Philadelphia

A local family working to make a difference for their 2 blind sons is hosting an evening of celebration and inspiration with elected officials, community leaders, business professionals, and special guests to raise funds for the Foundation they Co-Founded.

kristin smedley

Cocktails for the Cure raises funds for the Curing Retinal Blindness Foundation, a mission launched by the Smedley Family of Bucks County and others with children affected by CRB1 degenerative retinal disease (Retinitis Pigmentosa, Lebers Congenital Amaurosis). The goal of the CRBF is to raise funds for research to bring treatments to patients with mutations in the CRB1 gene. 

Leber’s Congenital Amaurosis (LCA) is the most severe form of early onset retinal disease as most LCA children are born with severely reduced vision or only light perception. CRB1-LCA degenerative retinal disease affects an estimated 300 children in the United States. Retinitis Pigmentosa (RP) refers to a group of inherited diseases causing retinal degeneration. RP affects 1 in 4000 people in the United States. CRB1-RP retinal disease is a severe form of Retinitis Pigmentosa (RP).

Michael and Mitchell Smedley are almost completely blind from this CRB1 disease. If there is no treatment, they will lose the minimal vision they have by their late teens. They are ages 14 and 10. The CRBF, led by Michael and Mitchell’s parents, is awarding grant money to teams all over the world (Philadelphia, Maine, Netherlands, Germany) to preserve and restore the vision of all the affected children.

Plus, Miss Philadelphia of 2013, Francesca Ruscio, will perform a special song with blind teenage musician, Michael Smedley Jr. In addition to a variety of entertainment, silent auction items will include vacations to popular destinations, sports memorabilia, theater packages, and more.

When: Friday, March 21, 2014 7:30pm-11:30 pm

Where: Spring Mill Country Club, 80 Jacksonville Road, Ivyland, PA

Cost: Tickets $50 per person before 3/16, $60 per person after 3/16

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2014-07-21T11:52:51+00:00