WESTPORT, Conn.-- 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 this rare neuro-developmental condition.
Ilana has known Josh and his family for more than seven years and, in this time, she has seen firsthand the problems and challenges Josh faces because of Angelman Syndrome.
Angelman Syndrome 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 the disease 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,” said Ilana “and once I made the decision to write a song for Josh, it seemed that the music and lyrics were already there”.
Ilana has released the single ‘Angel ’ along with the accompanying music video on YouTube , to raise awareness of the challenges faced by children like Josh and their families, and to raise much-needed money 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.