New York Times readers may have noticed some familiar faces in a recent article.  FightSMA Board Member Bill Strong, along with his wife, Victoria, and daughter, Gwendolyn, were recently featured in an article about changes in the insurance laws due to healthcare reform.  Three-year-old Gwendolyn has SMA Type 1.

SMA parents know insurance issues all too well.  The Strongs, for example, have been very concerned about their insurance company’s $5 million dollar lifetime cap on claims.  Gwendolyn has already consumed $2 million in care.  However, that worry is alleviated due to new regulations that went into effect last week, banning lifetime caps.  From the NY Times article:

“I want my daughter to survive,” Mr. Strong said. “But nobody wants to have the threat of complete bankruptcy looming over their head. It’s just kind of inhumane the way the world works in these brutal situations.”

Bill and Victoria’s nonprofit organization, The Gwendolyn Strong Foundation, is a partner in our drive to raise $200,000 for gene therapy trials aimed at finding a treatment for SMA.
You can read the entire New York Times article here.