Raising $50,000 to fund research into Angelman Syndrome cure

Westport singer-songwriter Ilana J is using her musical talents to help raise awareness of Angelman Syndrome in honor of 12 year old Josh Feygin, a Westport resident suffering from Angelman Syndrome, a rare neuro-developmental condition.                                                                                   

Ilana has known Josh Feygin and his family for more than seven years and in this time she has seen firsthand the problems and challenges that Josh faces because of Angelman Syndrome (AS). AS is caused by a faulty gene in the human brain and is characterized by profound developmental delays. Commonly, there are problems with balance and coordination, poor motor control, seizures, cognitive deficits and lack of functional speech. Individuals with AS require lifelong care and there are currently no known medical treatments available.

Despite these serious developmental issues, those affected by Angelman Syndrome,   typically have a happy disposition and a ready smile. “Josh is a beautiful soul and a joy to be around” says Ilana “and once I made the decision to write a song for Josh, it seemed that the music and lyrics were already there”. Ilana feels that for someone on the outside, it is hard to imagine a world through the eyes of a child with AS, but her connection with Josh over the years has given her a tiny insight into his world and was the inspiration behind the lyrics of her new song.

Ilana has released the single ‘Angel’, along with the accompanying music video now on YouTube,  to raise awareness of the challenges faced by children like Josh and their families, and to raise much-needed funds for the Foundation for Angelman Syndrome Therapeutics (FAST),  a charitable organization set up in 2008, committed to finding treatments and an eventual cure for Angelman Syndrome. For more information about AS and the work of FAST, please visit http://cureangelman.net/.

Ilana  has created a FirstGiving fundraising page with the goal of raising $50,000 in donations and the online campaign is now well under way. ‘Angel’ is available as a free download through SoundCloud and also to purchase from iTunes for $0.99 with all profits from sales going to FAST.