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SOURCE Roger Chapin
ORLANDO, Fla., June 2, 2014 /PRNewswire/ -- There is a rock anthem titled "School's Out for Summer". While most kids were celebrating their last day of school this week, 12 year-old Luke McMahon decided he would celebrate by singing for a friend in need.
Luke's friend is Blair Chapin, also twelve-years-old. 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 increasingly unstable on her feet. Cognitively she has regressed to 10 months old.
Before Blair's diagnosis, Luke and Blair were in the same pre-school class years ago. This week, Luke just completed 6th grade at Lake Highland Prep in Orlando, while Blair is facing a terminal illness.
Luke performed "Say Something" by A Great Big World, changing a few words for his special tribute. "Blair has always inspired me, I've known her since pre-school," said 12-year-old McMahon. "She's just so close to my heart."
A social media campaign called "Sing for Blair, Fund a Cure" has taken off in recent weeks, raising nearly $25,000 for research and attracting special performances for Blair from renown artists such as Davis Gaines and Neon Trees as well as local artists such as Matthew Fowler and the cast from Annie of a local middle school. All performances can be found at: http://www.SingforBlair.com
The campaign's goal is to bring attention to Sanfilippo Syndrome, 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 performances, donate, share or like, I'm hoping someone with a stronger voice than mine will bring more attention to our efforts to fund a cure," said Roger Chapin, Blair's father.
A full interview from Fox News 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. 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. All proceeds from the campaign go to the Sanfilippo Research Foundation, a 501c3, to fund research.
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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