For Our Family, Outings Are More Fun When There’s a Plan

When you’re living with Angelman syndrome, a well-executed plan makes the difference between tears and smiles. As the parent of an Angel, I know I can’t plan every aspect of our lives. However, attending important events like my daughter’s middle school football game requires some thought and finesse to…

An Easter Curveball That Spins Into a Happy Ending

I’m a big believer in sharing wins and not just challenges. Unfortunately, challenges, conflict, or a shocking headline is what draws attention. In full disclosure, there is no shocking tale here. However, there is a simple story about making the best of things when a curveball comes our way.

Angels Can Dance the Night Away

After a hot, humid summer with intermittent rain, we are ready to welcome fall, not just for the change of weather but because it is the beginning of the dance season! Dancing and pizza make for a perfect night out. (Courtesy of Mary Kay)…

Patient Advocacy Groups Worldwide Plan Events to Mark Rare Disease Day, Feb. 28

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…