In September 1995, my parents began running the family’s newly acquired lodge on the stunning Blue Ridge Parkway. My husband, Randy, our two children, Matthew and Katie, and I lived about an hour away at the time. I drove up every day to help with lodge business. As the parkway’s…

Cure SMA is leading an advocacy campaign for new research funding from the U.S. Department of Defense (DOD) that would be dedicated to addressing unmet challenges for people with spinal muscular atrophy (SMA). The campaign is seeking $10 million in SMA-dedicated funding from the DOD’s medical research program,…

At Cure SMA’s 13th annual Hope on the Hill event in Washington, D.C., spinal muscular atrophy (SMA) patients, their families, lawmakers, and other advocates gathered to celebrate recent progress in disease research and legislative priorities for the SMA community. Among the speakers at the event were several members…

In the 1995 drama “Mr. Holland’s Opus,” the film’s titular protagonist confronts a boardroom of school administrators during a pivotal third-act scene. Glenn Holland (Richard Dreyfuss), a longtime high school music teacher, refuses to back down when his superiors declare their intention to eliminate the school’s music and…

Rarely have I not received the best treatment available for my SMA. Doctors and nurses have been proactive in giving me aggressive care to prevent me from getting sick. But when I do, my medical team, including my mom, is aggressive enough in its care to prevent me…

Leah Zelaya, a 15-year-old with a rare form of spinal muscular atrophy (SMA), was chosen by the Muscular Dystrophy Association (MDA) to be its 2023 MDA National Ambassador. As national ambassador, the Brooklyn, New York, teenager represents all those living with a neurological disease in the U.S. She and…

Three years into my collaboration with biotech company Genentech, and I still feel like a fish out of water. This is what professionals call impostor syndrome (IS), defined by Lexico as “the persistent inability to believe that one’s success is deserved or has been legitimately achieved as a…

Back in November, the latest e-newsletter from We Carry Kevan (WCK) landed in my inbox, and this one included an intriguing request. They were looking for volunteers to serve as ambassadors who would promote the organization’s mission of redefining accessibility in their communities. One area where ambassadors were…

At first glance, my life may seem unusual. The more people get to know me, though, the more they’ll see that I share many of the same problems and emotions that most others have. Like everyone, I’ve experienced the death of loved ones. But I’ve also experienced loss in a…

From being a child actor to a lawyer in the entertainment industry, Alexa Dectis, who has relied on a power wheelchair to get around since she was 2, has gone far. Dectis, diagnosed with spinal muscular atrophy (SMA) type 2 when she was 18 months old, was named…