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SOURCE Roger Chapin
ORLANDO, Fla., May 30, 2014 /PRNewswire/ -- Blair Chapin, a twelve-year-old little girl is dying. Diagnosed with Sanfilippo Syndrome at the age of 6, Blair has slowly been dragged down by a disease whose life expectancy is in the teens. Blair no longer speaks, cannot feed herself and is becoming unstable on her feet.
Her father, Roger Chapin of Orlando, has taken to social media with a campaign to "Sing for Blair, Fund a Cure", in an effort to raise awareness and research dollars for a cure to save her life and the lives of other children with this dreadful disease.
The idea for a campaign started when he originally posted a video of himself singing John Denver's "Annie's Song" to Blair at bedtime, something he routinely does to comfort his daughter. Blair loves music.
Since then a few artists have joined the effort. Performances have been recorded including a dedication from the band Neon Trees of their hit song "Everybody Talks", the cast from "Annie" from a local middle school preformed "Tomorrow", and most recently, local Orlando musician Matthew Fowler and former Seven Mary Three drummer Giti Khalsa performed Fowler's original "Beginners" live for Blair at her home. All of the performance videos can be found at www.SingforBlair.com
"When I originally posted it, I did it more for Blair, our family and friends," said Chapin. "Then I got so many 'likes,' 'shares' and positive comments, I decided to try and turn it into a fundraising effort for medical research to fund a cure for Sanfilippo."
Chapin's hope is bring attention to the disease which is considered an "orphan disease" due to its rarity, lack of public understanding and absence of significant research dollars. "If I can convince others to watch the videos, donate, share or like, I'm hoping someone with a stronger voice than mine will help bring attention to our efforts to fund a cure," added Chapin.
Chapin's goal is to encourage others to "sing for Blair." He's hoping that friends, neighbors and ultimately other musicians, celebrities or athletes will join his cause.
A full interview regarding Chapin's mission can be found here: http://www.myfoxorlando.com/story/25583646/orlando-man-singing-for-his-daughters-life
Sanfilippo Syndrome is caused by a defect in a single cell. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (aka GAGs). Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III.
Promising clinical trials for a potential cure should start in 2015, but it will take millions of dollars to finish the research and ultimately conduct the trials.
For more information, to set up a performance or to inquire about an interview on the "Sing for Blair, Fund a Cure" campaign, send an email to firstname.lastname@example.org or connect via twitter, https://twitter.com/SingforBlair.
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