When I was diagnosed with spinal muscular atrophy at 15 months, doctors told my parents I would only live to be 12 years old. In July, I doubled my life expectancy. To mark the moment, I jumped out of a plane: "YOLO."
This January I became the first young adult to be named national goodwill ambassador of the Muscular Dystrophy Association, the iconic nonprofit that transformed philanthropy giving in America with telethons, cause marketing, and celebrities led by the legendary Jerry Lewis.
The group supports families living with muscular dystrophy, ALS, and diseases that remove everyday freedoms like walking, hugging, and even breathing.
Part of my job involves helping the association launch its revitalized brand and Live Unlimited campaign.
Live Unlimited means daring to live beyond your perceived limitations and redefining what’s possible.
But the association didn’t choose me because I jumped out of a plane: It chose me because I, like so many families, am pushing past my limits. My real Live Unlimited moment was crossing the street on my own – when I was 20.
The campaign wasn’t born in a conference room: It emerged when story after story, post after post of people doing extraordinary things appeared in mainstream media and social feeds.
The association decided to leverage this human truth, recognizing families for their persistence and hope, doing things previously considered impossible just by living their lives.
This is bold, given many health organizations use urgent images and messaging to drive donations. Although the fight to find cures is as urgent as ever, as more new drugs come to market, the Muscular Dystrophy Association believes families are still at the center of everything it does.
The nonprofit is doubling research spend targeting treatments and cures, increasing the families it supports by 50%, and bridging from its rich heritage.
This summer, Live Unlimited will leverage the strength of families coping with muscular dystrophy to inspire everyday Americans to "live a moment and give a moment."
News of the launch spread quickly on social media, with more than 1.5 million impressions on Facebook alone. Posts by supporters, families, partners, and celebrities kept the conversation going on Twitter, where sentiment was positive.
Traffic to mda.org on launch day was more than 2.5 times the average Friday, and the announcement was covered widely on TV, online, and in print.
I’m ready to rally the country around the association’s mission, deepen its reach among millennials, and champion services and policies for young adults like me transitioning to adulthood.
But I’m most excited to encourage more families – and the world around us – to defy their own limits.
Joe Akmakjian is national goodwill ambassador of the Muscular Dystrophy Association.
