明星荟萃的事件：提高对线粒体疾病的认识

从左到右：瓦西亨顿，歌手\/作曲家 对于魔法手镯；Ari Goldberg戈德堡的简介 Tamika拉米森，创始人的父亲；制作一部电影 基础；杰姆斯van der Beek，在魔术演员 手镯；琼斯阿黛勒，铸造主任 魔法手镯；李察树干，MD，分工 儿童医院的医学遗传学 洛杉矶；斯泰西戈德堡，RINA Goldberg的母亲； 迪伦本，病人的叶绿素a；希克斯， 病人的叶绿素a。

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 “魔术手镯。”

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。

“与线粒体疾病的生活 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

“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 魔术手镯, inspired individuals can become advocates and create more awareness for mitochondrial disease。”

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