“IN MY HANDS” @ FILM FESTIVAL: DOCUMENTARY TELLS STORY OF MARFAN SYNDROME AT FILM FESTIVAL
What did Abraham Lincoln and Johnathan Larson, the playwright of the musical “Rent,” have in common? They both had Marfan Syndrome, according to a new documentary that will be screened at the film festival this weekend.
“In My Hands” eloquently explores the lives of a few of the more than 200,000 people in the US stricken with Marfan Syndrome – a little known genetic connective tissue condition that, prior to the invention of open heart surgery in the 1950’s, usually meant a death sentence – and the people who love them.
I spoke with award-winning co-producer and director of the film, Brenda Siemer Scheider, earlier this week.
TBP: You have produced a number of films, including “I Know a Song” about your mother’s journey with Alzheimer’s, which aired on PBS. Your latest project, “In My Hands” documents those living with another disease.
Scheider: My longtime friend Ann Reinking came to me with the idea for the film. For years, as a mother of a son with Marfan Syndrome, she was consumed with how dilated his aorta was. She was always focused on how to keep her son alive but did not talk about it much.
It was such a thrill and honor when she suggested going to the national conference for people with the disease and just “see what happens.”
During the conference the kids went off and did tightrope exercises. When Ann saw that her son was the first one on the wire and despite everything, he could be out there and do that, it was brilliant both for her and her son.
TBP: And Ann, the Tony-award winning choreographer of “Fosse” and the revival of “Chicago,” was inspired at the conference.
Scheider: Having a tall, thin stature with disproportionately long legs, arms, feet and hands is one of the characteristics of Marfan Syndrome. Just seeing the kids move – just walking – is beautiful and it made Ann want to choreograph for them.
TBP: Which became a gorgeous part of the documentary.
Scheider: These kids never heard of choreography. They were so shy and not feeling comfortable in their bodies. To see them evolve over the course of filming the documentary was beautiful. Ann inspired them to believe that they could move in harmony.
Suddenly these girls felt special and like Ginger Rogers. Just looking like exquisite figures with simple movements – it was thrilling.
Ann will be at the discussion after the film to talk about this, the power of film.
You are only as sick as your secrets. Letting your secrets go liberates your body and I think this film and the dance helped liberate a lot of families.
Watching this film with us will tell you to take a look at your life and ask you to review it. There is a personal freedom found that everyone can relate to. The stories will wash over you.
“In My Hands” at the Paramount Theatre, Saturday, April 2 at 1pm. Discussion immediately following with Brenda, Ann and others featured in the documentary. Click here for the trailer.
For the complete Garden State Film Festival schedule, click here.
For more about Marfan Syndrome, visit Marfan.org.