To Help Cure Disease Causing Themselves, Their Loved Ones to Go Blind

(Long Island, N.Y.) Dix Hills resident Kevin Scott shows off his ‘Rock ‘N Roll’ style at the recent ‘Shades for Sight’ fundraiser – which encouraged participants to wear unique sunglasses in support of individuals diagnosed with Choroideremia who are forced to wear dark, protective eye wear to preserve their vision. Kevin and his brother E.J. were diagnosed with Choroideremia in 2003. For more information and to support the cause, visit CureCHM.org.

Two Long Island families, both affected by the hereditary eye disease Choroideremia (which causes progressive blindness), recently hosted a ‘Shades for Sight’ fundraising event – raising a total of $35,041 to support the $2.5 million needed to fund a cure. For more information and to support the cause, visit CureCHM.org.

Pictured (from left) are Melville resident and CHM Carrier Marion Scott; Choroideremia Research Foundation Executive Board Member and Choroideremia Patient Cory MacDonald; and Huntington Resident and CHM Carrier Kristen Scott.
 
Additional Information/Bios:

E.J. Scott (Diagnosed with CHM):

A Long Island native and cure advocate, E.J. has recently raised more than $13,500 individually after asking for sponsors to support his 71-pound weight loss efforts. In October, E.J. will run the 26-mile Chicago marathon blindfolded. E.J. also recently won the Chris Farley Humanitarian Award for both his comedic and fundraising achievements.
Allie Ging:

Huntington resident and father of two, Allie’s son Liam was diagnosed with CHM in 2007. Allie recently participated in the ‘Coast to Coast for CHM’ – riding his bicycle cross-country raising more than $40,000 for the Choroideremia Research Foundation. 
Kevin Scott (Diagnosed with CHM):

A Dix Hills resident, Kevin recently participated in the second international clinical ECT (encapsulated cell therapy) trial study designed to combat CHM by regenerating the damaged or missing proteins needed for healthy vision.
Marion Scott (CHM Carrier):

Event host and CHM carrier, Marion (Melville, NY) is a member of the Board of Directors for the Choroideremia Research Foundation. Her two sons (Kevin, E.J.) and her grandson (Liam) are each diagnosed with CHM.

About Choroideremia:
Choroideremia (CHM) is a rare inherited disorder caused by a specific genetic defect that leads to degeneration of cells in the eye that are essential to sight. CHM is genetically passed through families by an X–chromosome linked genetic defect. Because of this, except in rare cases, only males have loss of sight. A father will not pass the gene to his sons, but his daughters will be carriers. Mothers can be carriers and have a 50 percent chance of passing the disorder to their sons, who will suffer sight loss, or to their daughters who will be carriers. 

While CHM’s progress varies among individuals and even within families, loss of night vision may occur in childhood, loss of ability to drive typically occurs in the twenties, legal blindness in the thirties, significant loss of peripheral sight and dependence on mobility aids in the forties, functional blindness in the fifties, and total blindness in the sixties.

Only about 7,000 males in the United States have CHM. Since CHM is a single-strain genetic defect that is specifically identified – it’s cure will likely benefit the more than 2 million Americans living with more common and related genetic retinal degenerative disorders.