Documentary screening in honor of Howell teen with rare terminal disease raising funds for research

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Kyle Bryant celebrating his finish of Race Across America, sometimes called the “world’s toughest bicycle race.”

A local family whose teenage son suffers from Friedreich’s ataxia (FA) – a debilitating, life-shortening disease that currently has no treatment or cure — invites the community to attend a private screening of “The Ataxian.”

This award-winning documentary shares the story of Kyle Bryant’s determined journey across the United States despite having FA in what Race Across America (RAAM) calls, the “world’s toughest bicycle race.” Howell residents Lee and Ruth DeWitt will host the screening in honor of their son Jack, currently a senior at Howell High School, who was just 10 years old when he met Kyle and his team along their route.

The documentary will be screened at the Historic Howell Theater in Howell on Sunday, Oct. 8, 2017. Doors open at 2 p.m. The film — with a run time of 80 minutes — starts at 2:30 p.m.. Bryant will attend the event and participate in a question-and-answer session following the screening.

There is a suggested donation of $20 per person, though any amount is welcome. All funds raised will go to the Friedreich’s Ataxia Research Alliance (FARA), a grassroots non-profit that is focused on funding and facilitating research leading to treatments and a cure for FA.

Jack DeWitt with his family: mother, Ruth; brother, Colin; and father, Lee.

The family’s goal is to raise $7,000 to help fund these research efforts. They also hope to raise awareness about this rare disease, which affects 1 in 50,000 people. Although rare, 1 in 100 people are carriers of the defective gene that causes FA, but most, like the DeWitts, are unaware until the disease affects their family. FA causes progressive nervous system damage and impairs muscle coordination. While loss of mobility is most noticeable, FA also causes slurred speech, hearing loss, vision loss, fatigue, scoliosis and a shortened life span due to heart failure.

The journey to a diagnosis of FA was long and difficult for the DeWitt family. They first noticed problems with Jack’s balance and coordination at age 5, but it wasn’t until he was 10 and starting to use a walker that genetic testing revealed the true cause of his decline.

“FA is relentless,” said his mother, Ruth DeWitt. “In the seven years since ‘The Ataxian’ was filmed, Jack has lost the ability to walk and sit unsupported. He now needs help with all activities of daily living and often misses school and time with friends.”

The biggest worry for Jack’s future?

“His heart,” DeWitt said. “Heart failure from FA can strike in young adults and even teens in more severe cases. Illness, surgery or injury can increase this risk, so keeping Jack as healthy as possible is our top priority.”

This is not the DeWitts’ first fundraiser for FARA.

In 2010, Jack DeWitt, in the green shirt at left, with his brother, Colin, right, watch Kyle Bryant, star of the documentary, during the RAAM event.

“When Jack met Kyle during RAAM, it gave our family hope and purpose to help us move past this terrible diagnosis,” DeWitt said. “Jack was inspired to do his own bike ride to raise money for FARA and he pledged to raise $50. With incredible support from friends, family, classmates and the Howell community, we raised over $12,000, shattering Jack’s initial goal.

“We are so grateful for the ongoing support of our friends and family through all of this. They have donated wedding gifts, hosted school fundraisers and Euchre events, run marathons, donated through their home businesses and have joined in all our fundraising and awareness efforts. We hope the community will come out for this amazing film to support FARA once again in their life- saving mission to treat and cure FA.”


For more information on “The Ataxian,” visit theataxianmovie.com. Ticket reservations are required for this private screening. To reserve tickets, visit www.curefa.org/AtaxianHowell. Donations are accepted online or at the door with advance registration in cash or check payable to FARA.


The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax- exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst between the public and scientific community to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit curefa.org.


 

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