The press are invited to attend the debut reveal of a Magic Wheelchair Halloween costume for a young girl with a rare disease. October 2, 2017 at 3:30pm 500 East Kendall Street, Cambridge, MA
FOR IMMEDIATE RELEASE:
Disorder: The Rare Disease Film Festival is pleased to partner with MagicWheelchair.org and with support from Shire, we are able to present a custom built, dream-come-true wheelchair Halloween costume to a child with a rare disease in our audience after one of our film screenings.
"We are so excited to be invited to be part of Disorder and to be sharing what we do with all those who come to learn a little bit more about families like ours.” said Ryan Weimer founder of Magic Wheelchair and father to boys with Spinal Muscular Atrophy.
Dalia Flaggert is a young girl with MERFF syndrome and her wish was to have her wheelchair transformed into a magical pony ride.
“Dalia spends every day confined to her wheelchair; transforming it into something magical is a gift beyond measure. To receive it in the context of the rare disease film festival is an incredible way to spotlight MERRF Syndrome and to help show what life is like for kids with rare diseases,” said Jessica Fein, Dalia's mother.
“These costumes transform not only the wheelchairs but the way the child is perceived. She becomes a hero. Showing how these people with rare disorders not just live their lives, but find the adaptations and accommodations and the surprising joys in life is what our film festival is all about,” said Daniel DeFabio co-director of the film festival.
The elaborate wheelchair costume is being built by team of local volunteers lead by Bonnie Regan.
"When I saw a post from Magic Wheelchair come across my newsfeed on Facebook, I knew I had to volunteer to help out with a build. To be able to give a magical moment to a deserving kid like Dalia is an honor. Revealing the costume at the film festival and bringing awareness to rare diseases just adds another positive layer to the whole experience," said Regan.
“Halloween can be tough for children in wheelchairs. Just think how few front doors are ramp accessible. Getting their wheelchair transformed into one of the coolest costumes in town helps bring these kids back into the fun,” said DeFabio.
ABOUT MAGIC WHEELCHAIR
Ryan and Lana Weimer, the founders of Magic Wheelchair, have five children, three of whom were born with Spinal Muscular Atrophy, which requires the use of wheelchairs for the entirety of their lives.
Each Halloween, Ryan made the biggest, “baddest” costumes he could for his sons, Keaton and Bryce. Once news of these costumes spread, Ryan began receiving requests from parents around the world asking if he would transform their kids’ wheelchairs into “magic”.
In 2015, Ryan and Lana decided to make that happen and started Magic Wheelchair, the non-pro t organization that seeks to put a smile on the face of every child in a wheelchair by transforming their wheelchairs into awesomeness created by volunteer hands and kids’ imaginations. They give kids in wheelchairs an unforgettable experience by creating custom costumes for them at no expense to their families.
ABOUT DISORDER: THE RARE DISEASE FILM FESTIVAL
Disorder: The Rare Disease Film Festival will screen more than 30 films over two days, shining a light on life with two dozen different rare diseases. It was founded by two rare disease dads hoping to spark more conversations, collaborations and maybe cures. The audience will have an opportunity for questions and answers with some of the filmmakers following the presentation of their film.
Between the slates of films rare disease researchers and patient advocates will also share stories from their experience. The event has support from NORD, The Mighty, RDUF, MassBio, Global Genes, Magic Wheelchair, Rare genomics Institute, Shire, Vertex, Sanofi Genzyme, Premier Research, The Menkes Foundation, The Patient Experience Project, Horizon Pharma, 32 Mile Media, Alnylam, Cambridge BioMarketing, and FDNA.
daniel@ this website
Press photos from the films are available here http://tbf.me/a/Bqn2Ug
Broadcast or web video clips are available on request.
The list of films is online at https://www.rarediseasefilmfestival.com/selection2017
Photos and videos of Magic Wheelchair costumes are online at www.magicwheelchair.org