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Added: June 8, 2009

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Brenda Siemer Scheider Debuts New Documentary Film - 'In My Hands'

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Joel Grey, Brenda Siemer Scheider and Mayor Michael Bloomberg enjoyed a brief bit of levity at the screening of Scheider's documentary "In My Hands." Photos by Ann Watt

New York City - Brenda Siemer Scheider debuted "In My Hands," a new documentary by Sister Productions, which was screened for the first time at the NBC Universal Screening Room in New York City on May 27. The film - created by Tony Award winner Ann Reinking, writer, director and filmmaker Scheider and Emma Joan Morris - is a moving, heartwarming account of learning to live with Marfan syndrome, a potentially life-threatening disorder of connective tissue.

Ann Reinking and Gabriela Garcia.

Mayor Michael Bloomberg was on hand to introduce the film to a packed room of VIPs and friends. He had previewed the film the night before and said, "It is very moving and will bring tears to your eyes."

The documentary focuses on several individuals and families, including the Ciccariello family of Sag Harbor who have faced medical and psychosocial challenges with Marfan syndrome. The film was shot partially at the National Marfan Foundation's (NMF) 2007 annual conference at Stanford University.

Few people know about Marfan's which is one of the reasons the producers decided to make the film to educate the public and shine a light on a potentially lethal disease. Connective tissue is found throughout the body; thus Marfan syndrome affects many body systems. People with the condition are frequently tall, with disproportionately long arms and legs. They often have indented or protruding chest bones; scoliosis; flat feet; hyper-flexible joints and other skeletal abnormalities.

John Ciccariello, Danica Ciccariello, Faye Ciccariello and Tracy Ciccariello of Sag Harbor.


There are also complications related to their eyes. The life-threatening aspect of the condition is the affect on the aorta, the large blood vessel that carries blood away from the heart. The weak connective tissue in the aorta makes the vessel prone to enlargement leading to a tear, which can be fatal, or a deadly rupture. Approximately 200,000 people in the U.S. have Marfan syndrome or a related connective tissue disorder. In most cases, the condition is inherited; one-quarter of people with Marfan syndrome are the first in their family to be affected.

Marfan's came to national attention when it was announced that Jonathan Larsen who created the smash musical "Rent" died of the disease just before the show opened. Closer to home Hamptons.com's contributor John Wegorzewski lost his younger sister Elizabeth to the disease when she was only 40 years old.

Judy and Jerry Lerman with their son Jonathan and his wife Barbara.


Reinking, with her unique talent as an accomplished dancer and choreographer, is seen in the film transforming the body image and self-esteem of a group of children, from elementary school age to teens, as she teaches them how to move their body and dance. She is able to bring their inner beauty to the forefront, giving the teens a new self-image and new found confidence. Reinking's son, Chris, is affected with the condition and is among those featured in the film. Now a teenager, he was diagnosed at the age of two years old.

Dance sequences are interwoven with the heart-wrenching account of several people with Marfan syndrome, including members of the Ciccariello family. Priscilla Ciccariello, a former librarian and the chair emeritus of the NMF, who currently lives in Sag Harbor, lost her husband, the oldest of her seven sons and a grandson to Marfan syndrome. Two of her remaining sons and her granddaughter have the condition. Her youngest son, John, and his daughter, Danica, of Southampton, are among those featured in the documentary. A number of the family members were on hand for the emotional first screening.

Jonathan Martin, Brenda Siemer Scheider, Ann Reinking, and Emma Joan Morris after the screening.


"In My Hands" is a compelling story of transformation of people with Marfan syndrome and of Ann, as she watches her son grow with the condition," said Carolyn Levering, President and CEO of the National Marfan Foundation. "We are so thrilled that Ann, Brenda and Emma were able to take their vision and create this powerful documentary. It has a message of hope that goes beyond the Marfan community. It will open the eyes of anyone with a chronic illness to see that there are choices in how we deal with the cards that are dealt to us and there are tools that can help us see the beauty and potential in ourselves."

Among those on hand at the reception and screening were East Enders Tony Award winner Joel Grey and Drama Desk Award winning choreographer Patricia Birch, Karen Murray, President of VF Sportswear and a member of the NMF Board of Directors, Hal Dietz, MD, John Ciccariello, Danica Ciccariello, Faye Ciccariello and Tracy Ciccariello, Gabriela Garcia, dance captain for "Chicago" and co-director of Revolution Latina, Christian Scheider (Brenda's son), film director Peter Medak and Judy and Jerry Lerman with their son Jonathan and his wife Barbara whose daughter has Marfan's, Amelia and Steve Marpman, Michael Lopez, Jonathan Martin Erzebet "Liz" Foldi who was in "All That Jazz" with Roy Scheider and Ann Reinking in 1979.

The documentary producers are currently seeking distribution or broadcast opportunities. Inquiries may be directed to Jonathan Martin, NMF Director of Education and Awareness, 800-8-MARFAN, ext. 16, or jmartin@marfan.org.

Judy and Jerry Lerman with their son Jonathan and his wife Barbara of Southampton.


For More Photos, Visit The Following Link(s)

Brenda Siemer Scheider Debuts 'In My Hands'


Comments

Guest (JBradley) from Australia, Queensland says:
Look forward to seeing this. Was able to buy a copy of movie "Mo". The more films and Documentaries about Marfan's the better. My daughter has Marfan's.

Guest (mike) from slc utah says:
Erzsebet your still a sweet heart,and a beautiful princess.

Guest (Cathy DeBellis) from Poconos, Pa says:
My son Kyle Moran passed away from this disease six years ago. Please make every effort to get this on TV. There are still so many families unaware of this disease and need to be made aware and educated. Thank you for all you are doing and continue to do. In Loving Memory of my son, Kyle.

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