Ira Walker, living with SMA type 2, named MDA National Ambassador
Florida resident, 39, eager to start 'raising my voice for the MDA community'
The Muscular Dystrophy Association (MDA) has chosen Ira Walker, a Florida resident living with spinal muscular atrophy (SMA) type 2, as this year’s national ambassador.
In this new role, the 39-year-old Walker will share his story nationwide, with an aim of raising awareness of the MDA’s mission to help empower people with muscular dystrophy and other neuromuscular disorders, including SMA. The nonprofit advocacy organization seeks to help patients with such conditions to live longer, more independent lives.
“It is my honor to accept the role as Muscular Dystrophy Association’s National Ambassador in 2024,” Walker said in an MDA press release.
Walker joins national ambassador Leah Zelaya, 16, of Brooklyn, New York, who also has a form of SMA, and is continuing her second year as an MDA representative.
Ambassadors participate in MDA events across the country, calling attention to the need for critical funding for innovative research and care, and advocating for the nonprofit’s legislative priorities.
New MDA ambassador lives independently with caregiver support
Walker was just age 1 when he was diagnosed with SMA type 2, which causes progressive muscle weakness and leads to other issues that affect everyday life. Still, he did not let his condition stop him from living fully. As a teenager, he was a clarinetist and percussionist in his school band, later attending the University of Missouri as a psychology major. He’s worked full time in a human resources position and continues to live independently while managing caregiver support.
The new MDA ambassador credits his sister, who’s six years older and also has SMA, with serving as a mentor to him. From an early age, she showed her brother how to navigate life with a physical disability. Both siblings benefited from parents who instilled in them the mindset that, with hard work and determination, they could succeed in life, he says.
“What a wonderful way to kick off the New Year for this nonprofit organization that has brought so much joy and support to my family throughout my life,” said Walker, who’s from Fort Lauderdale.
“I always knew that I would work professionally full time and achieve my goals regardless of my disability by modifying my environment, being a good communicator, and letting people know when I needed help,” Walker said. “I look forward to continuing to motivate myself and others by raising my voice for the MDA community!”
Scott Wiebe, the MDA’s director of community programs, said the nonprofit was “honored to welcome Ira Walker as our newest MDA National Ambassador,” calling his an “incredible story of independence, strength, and empowerment.”
I always knew that I would work professionally full time and achieve my goals regardless of my disability by modifying my environment, being a good communicator, and letting people know when I needed help. I look forward to continuing to motivate myself and others by raising my voice for the MDA community!
Ambassadors play a key role in the MDA’s mission, Wiebe said, helping to “accelerate research, advance care, and empower the families we serve through their unique voices and perspectives.”
“They passionately share their authentic personal viewpoint to raise awareness across the entire MDA community,” Wiebe said.
Zelaya, who lives with scapuloperoneal spinal muscular atrophy, an ultra-rare form of SMA marked by progressive muscle weakness and atrophy in the shoulders, lower legs, and hands, will continue to share her story in the coming year and apprise people of MDA efforts and programs.
Her main goal as an ambassador is to encourage and support others who live with neuromuscular disorders, and their families, she said.
“By sharing my story, I hope to encourage full inclusion for people living with disabilities in our culture and others in our community to join our mission of finding treatments and cures for neuromuscular diseases,” said Zelaya, who as of early last year was able to walk with assistance and perform as an actor, dancer, model, advocate, and adaptive athlete.
The teen credits the MDA Summer Camp with boosting her self-confidence, and says she enjoys attending the annual MDA Conference — calling it “a global event with the brightest minds working together for scientific and clinical breakthroughs.”
Over the past 70 years, the MDA has worked with nearly 50 national ambassadors who have traveled the U.S. to meet with volunteers, organization partners, and even the country’s presidents.
The MDA also expressed its gratitude to Amy Shinneman, who served as MDA national ambassador from 2022 to last year and lives with a type of muscular dystrophy called Bethlem myopathy.
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