Ari was diagnosed with SMA Type I at 6 months of age in 1982, when the prognosis was almost hopeless. 38 years later, medical therapies have changed the prognosis to hopeful. Yet, the rest of society has a long way to catch up in how they see people with SMA. Through his column, “Soaring With Hope,” Ari shares how he changes views through advocacy, innovative technology, and determination. In his writings, Ari wants to inspire hope by helping others rise above their frustrating hardships.

Learning to Laugh and Heal After Facing Danger

Have you ever been in a deadly serious situation that you looked back on later with humor? Perhaps you’re doing your normal activities and suddenly slip. Or, maybe an object accidentally falls and smacks you in the head. Don’t get me wrong, a slip and a fall or a smack…

You Can Become an Honorary SMA Athlete, Too

The Olympic Games in Tokyo are happening right now, which makes me think about how those of us with SMA are athletes in our own special way. How do we win against the opposing team of our symptoms? We must have high amounts of endurance, the will to overcome…

Building a Healthy Relationship With Your Body

So you’ve badly hurt another person’s feelings, and the guilt they’re making you feel is burning hot. You know how that goes, right? Once, a friend was so steaming mad about a mistake I made that you could cut the atmosphere’s tension with a knife. I…

Asking for Help Takes You to New Highs, Not Lows

Sometimes people exclaim, “I never thought I would be doing this a year ago,” to negatively describe an experience. For example, asking for extra help to survive may cause some to think they are stooping to a new and shameful low. Even with all the help I’ve needed my whole…

Say Yes to Yourself and Your Ambitions

Over the years, I’ve thought, “I wish I didn’t have all of these responsibilities and could just have fun all of the time. Living with SMA provides enough pressure that I didn’t ask for!” Growing up, I would frequently hear, “Go study for those two tests you have at the…