Serbin (left), Zan and host Zegan in Clear Channel booth

HDSA-San Diego chapter advocates Bill Johnston, Ken Serbin (aka Gene Veritas), and Lindsey Zan gave a 30-minute interview to the Clear Channel radio network on how Huntington’s disease has affected their families and the steps they have taken as advocates to raises awareness and funds towards treatments and a cure.

Interviewed by Clear Channel broadcaster Mark Zegan for the network’s “Community Connection” program on May 26, the three advocates explained the basics of HD, highlighted chapter fundraising events, and outlined HDSA’s efforts to pass The Huntington’s Disease Parity Act of 2011. The program aired on AM 600 KOGO on May 28 and on other Clear Channel outlets.

Bill, the public relations director of the San Diego Chargers, recounted how his family has dealt with the impact of HD after his wife Ramona was diagnosed with the condition in 1999. Ken, whose mother died of HD in 2006, spoke of his exit from the “HD closet” to assume publicly his gene-positive status for the disease.

The untested daughter of an HD-stricken man, Lindsey emphasized the need for all citizens to support the Parity Act, a bill originally introduced into Congress by San Diego Reps. Bob Filner (D) and Brian Bilbray (R). The bill would update the severely outdated government criteria for determining disability for HD patients and would waive the two-year waiting period for Medicare benefits. Lindsey noted that California Senators Barbara Boxer and Dianne Feinstein have not yet co-sponsored the bill, which already has four sponsors in the Senate.

To hear the interview in its entirety, please click on this link: Clear Channel Interview May 2011.