Muscular Dystrophy Association returns to NYC to unveil new goals

The Muscular Dystrophy Association is coming back to its roots to launch a new era for the organization, while continuing strong on the main focus of its mission — the families they serve.

Last year, MDA announced that it would discontinue production of its broadcast telethon — which for years was emceed by Jerry Lewis and raised awareness and brought in donations for children and adults fighting muscular dystrophy, ALS and other life-threatening diseases. And for a while, the question hung in the air on how the organization would move forward.

However, on Friday MDA plans to announce to families and supporters that it is here with a new look, new campaign and big news — all based on listening to the families it has served for decades.

One of the biggest changes will be the organization’s outreach with its families and the public. There will no longer be broadcast telethons, because instead MDA plans to strengthen its digital presence and reach a new generation — which includes the children it has helped, who are now stronger and older thanks to advanced medicine.

To start off this new approach, MDA will live stream Friday’s announcement via its website at mda.org.

“We needed to make an important change to pivot a new way to connect with Americans and connect with a new generation of supporters,” said Steve Ford, MDA executive vice president and chief marketing officer.

To make the announcement — which will be made at an event for families and supporters — MDA decided to return to Carnegie Hall in New York City where in 1956 it held its first telethon.

In New York, services are provided to more than 7,000 residents living with neuromuscular disease and there are 13 MDA Care Center clinics throughout the state.

“As we mark a new era and renew our commitment to our families we recognize that returning to our roots is very important,” Ford said.

MDA also plans to unveil a new logo with a heart in the center of its letters capturing the emphasis of the families the organization serves and also the generosity of everyone who has supported and donated to MDA.

“This whole movement is inspired by our families,” Ford said. “Families are our champion and we want to put them center stage [Friday]…[Friday] is just the start.”

The organization will also introduce its five-year plan to find treatments and cures for muscular dystrophy, ALS, and related diseases — all which Ford said limit people’s ability to move and take away their strength.

Friday’s event will also launch a new look for its website, which will feature a communication form for families and also a blog where families can share their stories.

“This is a reflection of listening to the families,” Ford said. “We are so inspired because for our families, treatments and cures can’t come fast enough.”

MDA plans to also introduce its new National Goodwill Ambassador — and first young-adult to be the national face of the organization in over five decades — Joe Akmakjian from Colorado who was diagnosed with spinal muscular dystrophy.

Although doctors only gave Akmakjian a life expectancy of 12 year olds, last year he celebrated his 24th birthday by skydiving.

“I think it’s a perfect time to come into this organization and be part of this great change that is about to happen,” Akmakjian said. “Its always been my dream to speak about the realities of living muscular dystrophy and I am excited to get to that do on a large platform.”

The 24-year-old added that he plans to speak with families and MDA supporters, and share his story on how the organization was there for him his entire life.

And after years of always dreaming of traveling to New York City, Akmakjian said he never had a good reason — until now.

“It feels like this is the perfect reason to be here and it feels like this is why I was supposed to come,” he said. “And I really can’t believe that I am here.”