By Jenna Lennon
Duchenne muscular dystrophy is the number one genetic killer of boys in the world.
In “To the Edge of the Sky,” Emmy and Oscar Award winning producers, and Old Field natives, Jedd and Todd Wider tell the story of four mothers in their fight against the U.S. Food & Drug Administration for the approval of a potentially life-saving drug for this fatal disease.
The world premiere of the 118-minute documentary at the 22nd annual Stony Brook Film Festival was met with a standing ovation July 23. Continued feedback from the audience, during and after the Q&A period, has been nothing but positive for the brothers and for raising awareness for treatment of this disease.
“As a documentarian, there’s no greater reward than hearing audience members come up afterwards and ask how we can help, what we can do, how can we bring further attention or shine further light on these issues and help the families that are suffering so deeply,” Jedd said.
“We spoke to so many people after the film who wanted to get involved and that’s incredibly rewarding to us as filmmakers,” he continued. “We invest years of our lives into these topics to help bring attention to these issues to help these families and for us there’s just nothing greater than that, than hearing that response.”
With such a large audience, Todd couldn’t help but be emotional as he took the stage with his brother for the Q&A session.
“It was a weird thing — I’m not normally that emotional during a screening,” he said. “I got to say it …. was a little surreal. It’s not like I hadn’t seen it before. I’ve probably watched it about a thousand times now, but I found that screening was extremely, unbelievably, emotionally powerful.”
Jenn McNary, one of the mothers in the film, brought her sons Max and Austin to the July 23 premiere.
“Jenn and her family have been incredibly supportive of the film from the very beginning, as has all of the other families as well,” Jedd said. “They’ve all been strongly behind the film and hoping that this film could bring more attention to these issues and bring more attention to the potential companies out there and the foundations that are working to help fund further research.”
Filming took place periodically over almost four years and “was a significant emotional investment,” Jedd said.
“At any given point, the story line would change on the drop of a dime,” he continued. “We became very attached to these boys and very attached to these families.”
Duchenne is the most common type of muscular dystrophy and occurs from a mutation in the gene for the protein dystrophin. Symptoms begin appearing around the age of three or four. At first, young boys start having trouble walking. By their early 20s, they’re essentially paralyzed from the neck down.
“To the Edge of the Sky” examines the fight for FDA approval of the drug eteplirsen, produced by Sarepta Therapeutics, that is meant to help produce the missing protein. In 2016, and at the end of the film, the FDA granted an accelerated approval for the drug, but Todd said the fight is far from over.
“We live in the United States of America where we’re in a functioning democracy, and we can move our political organizations and our political institutions with the power of our will if we choose to,” Todd said. “And in the case of this situation, it was really these four moms that really moved the needle, we feel, on how the FDA was sort of dealing with this … it was the power of their advocacy and the connection and their love for their kids that helped to sort of focus that attention on what was going on in terms of the drug approval process in this particular case.”