This article about Abi who is diagnosed with centronuclear myopathy, first appeared in a 2012 issue of The Information Point newsletter Our World, when her mum Lisa told us about Abi appearing on the MDA Telethon.
Abi Shrader is 12 years old and is diagnosed with centronuclear myopathy. She lives is Baltimore, USA, with her mum Lisa and recently started 6th grade.
Earlier this year, Abi was invited to take part in the MDA telethon, the fundraising event which happens each Labor Day weekend to raise money for the Muscular Dystrophy Association.
The first MDA Telethon was broadcast in 1966 by a single television station in New York and today is broadcast by more than 150. It is the most successful fundraising event in the history of television, raising nearly $2 billion during its first 46 years.
Each year celebrities from the worlds of film, television and music suppport the cause, which enables American families living with Muscular Dystropy to show how the MDA makes a difference in their lives and MDA funded researchers and clinicians to describe why the Telethon is so vital to their work.
Lisa says ‘Abi was invited to do the telethon because the young lady that we deal with at our local MDA office (her name is Rachel), overheard Abigail talking with another young girl at an MDA monthly teen group event. Rachel was impressed with how well spoken Abi was during that conversation and had the idea that maybe she would be a good candidate for it. Abi got to meet our local tv anchors, sit at the anchor desk and visit the weatherman and the weather station’.
During the telethon Abi told viewers about how she likes to dance, write stories, draw Japanese Anime, hang out with her friends and play with her pet ferret Rascal. She also spoke of the difference that being able to attend MDA camp has made to her, which included the opportunity to ride motorcycles, go on boat rides and the sense of belonging that she felt being around other children like herself.