Star-Studded Event: Raising Awareness of Mitochondrial Disease

Published on 
March 4, 2014

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From Left to Right: Vasi Hunton, singer/composer for The Magic Bracelet; Ari Goldberg, Rina Goldberg’s father; Tamika Lamison, founder of Make A Film Foundation; James Van Der Beek, actor in The Magic Bracelet; Adele Jones, casting director for The Magic Bracelet; Richard Boles, MD, Division of Medical Genetics at Children’s Hospital Los Angeles; Stacy Goldberg, Rina Goldberg’s mother; Dylan Prunty, patient of CHLA; Lillian Hicks, patient of CHLA.

Recently, Children’s Hospital Los Angeles and Mito Action came together to host the Mito Patient & Family Social, a star-studded event that introduced Chandra Wilson of television’s “Grey’s Anatomy” and the cast and crew, who includes James Van Der Beek, of Rina Goldberg’s “The Magic Bracelet.”

The social, which was held at Children’s Hospital, allowed families affected by mitochondrial disease to meet each other, share their stories and resources and give and get support.

Living Well with Mitochondrial Disease has been one of my go-to sources of comfort and information while navigating through my own daughter’ Mito diagnosis,” said Wilson. “Families were provided with an environment of camaraderie and understanding when it often times feels like no one understands the uncertainties, similarities and differences involved in having a loved one with mitochondrial disease.”

Mitochondrial disease, also known as “Mito,” is an inherited chronic disease that causes debilitating physical, development and mental disabilities. About 1 in 20,000 people are born with or will develop Mito later in life. The symptoms include, but are not limited to, muscle weakness and pain, loss of muscle coordination, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities and heart, liver or kidney failure. There is currently no cure, but research of treatment is ongoing.

"This was truly needed and I look forward to more like this for our growing Mito community." - Chandra Wilson

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“There is a lot of work to be done in educating the public and medical community and there’s a need in finding more key professionals and specialists to treat this patient population,” said Richard Boles, MD, Division of Medical Genetics. “With the help of MitoAction and films like The Magic Bracelet, inspired individuals can become advocates and create more awareness for mitochondrial disease.”