Jenn McNary and her children, above, are featured in the movie ‘To the Edge of the Sky.’ Photo from Brian Ariotti
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.
‘To the Edge of the Sky’ is produced by Jedd and Todd Wider brothers who grew up in Old Field. Photo from Brian Ariotti
“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.”
The 2017 Stony Brook Film Festival will host the world premiere screening of ‘To the Edge of the Sky’ on July 23. Photo courtesy of Staller Center
Presents mix of independent features, documentaries and shorts
By Jill Webb
Drop your beach towels and grab some popcorn because the Stony Brook Film Festival kicks off tonight at 8 p.m. and will run for 10 nights. The festival’s director, Alan Inkles, who has been curating the event since its inception, said in a recent interview that the idea to showcase great films annually came to him because “film is the art of this century.”
Festivalgoers view these films in the main 1,000-seat auditorium of the Staller Center for the Arts at Stony Brook University, which features a 40-foot-wide screen for maximum viewing pleasure.
Inkles’ biggest challenge as festival director is finding the films that are going to “draw 800 people on a Thursday night — in the summer on Long Island — to a film they’ve never heard of.”
Last year, the director started using www.filmfreeway.com as a way for filmmakers to submit their films, saying the service is “the most fair to both filmmakers and film festivals” due to its piracy protection. Inkles and his team received over 1,000 submissions from the website, along with about 700 from sales agents internationally — all of which are viewed between January and May.
Diversity on the big screen
The vast number of submissions have led to greater diversity. This year’s lineup includes films from Italy, Armenia, France, Sweden and the Netherlands among others and puts a spotlight on a variety of relevant topics including the LGBTQ+ community and immigration.
The big draw this year, Inkles said, is an abundance of women directors — a demographic that often gets overlooked in the film industry. “Almost 50 percent of our films are directed by women — features and shorts,” Inkles said, adding that three of them write, direct and star in their films.
The opening and closing night films both have one thing in common: Germany. Each of these German films will be making its U.S. premiere at SBFF on its respective night. Opening the festival is “Welcome to Germany” (“Willkommen bei den Hartmanns”), written and directed by Simon Verhoeven, a ‘laugh-out-loud’ comedy about a refugee from Nigeria who, while awaiting the ruling on his asylum request, is taken in by a wealthy but severely dysfunctional family from Munich.
A scene from ‘Text for You’. Photo courtesy of Staller Center
The closer, titled “Text for You” (“SMS für Dich”), is a romantic comedy that explores coping with grief and loss. Karoline Herfurth is a triple threat in the movie’s production as director/writer/actress. The film’s main character, Clara, is struggling to get over the death of her true love and begins to send text messages to his old number. The new owner of the phone is compelled to answer these messages, creating a dialogue between the two strangers. Inkles describes the film as a “German [version of] ‘When Harry Met Sally.’”
Long Island: In front and behind the camera
While Inkles stresses that he selects films solely on being the best of the bunch, he admits he loves getting a Long Island angle in. This year’s Long Island connections includes “The Second Act of Elliott Murphy,” a documentary chronicling Rockville Centre native Elliott Murphy’s journey to rock star status, starting in mid-1970s America and eventually traveling to Europe where his career takes off.
While the film is set in Maine, a great deal of “The Sounding” — which follows a woman who has chosen to remain silent until a traumatic experience leads her to speak in only Shakespearean words — was shot here on Long Island.
The 2017 Stony Brook Film Festival will host the world premiere screening of ‘To the Edge of the Sky’ on July 23. Photo from Staller Center
Academy Award winners and Ward Melville graduates, Todd and Jedd Wider, have been making films together for 19 years. Their documentary “To the Edge of the Sky” focuses on mothers trying to get FDA approval for a drug to save their sons affected by the fatal disease Duchenne muscular dystrophy (DMD). Jedd Wider got the idea for the film at an event listening to a Harvard-educated doctor talk about his son’s experience with DMD and the extents his family was going through to save his life.
“I was mesmerized by what he had to say,” Wider said. After the event, a Google search on the doctor, Benjy Seckler, lead Wider to his first meet-up with a family challenging DMD. The film watches the mothers transform into “very serious political activists as they attempt to rally the FDA,” Wider said. “It’s really a window into the FDA system, but it’s also a very serious look and window into the troubles, the issues, the challenges, the tragic circumstances surrounding these families as they attempt to find a cure and secure that cure for their children.”
The short “Brothers” will be screened before the Wider brother’s film and is directed by another Ward Melville graduate, Zachary Fuhrer. “Brothers” tells a story of a 9-year-old boy who deals with experiencing guilt after accidentally hurting his little brother while playing baseball. Fuhrer looked back on the way he dealt with confrontation as a child as inspiration for the film. The take-away Fuhrer hopes the audience gets is “what it truly means to say I’m sorry, and what it truly means to show compassion for another person and understand wrong-doing.”
Exploring your options
Presented by Island Federal Credit Union, the festival will run through July 29. For $85 you can purchase a Festival Pass to see all of the films, along with promotions for local restaurants through labor day, seating guaranteed up to 15 minutes prior to the showing, first entry for preferred seating options and some merchandise freebies: a film pass, lanyard and tote bag.
If you’re looking for something a bit more lavish, try the Gold Pass: For $225 you get all the perks of the Festival Pass but also entry into the Opening and Closing Night parties along with access to the VIP seating with the filmmakers. Individual tickets are $12 adults, $10 seniors and $5 with a student ID. Free parking is available in the Visitors Parking Garage during the festival.
For more information on the program, tickets and trailers check out www.stonybrookfilmfestival.com or call the Staller Center Box Office at 631-632-2787.
