First Annual International Angelman Syndrome Day
Actor Colin Farrell Celebrates International Angelman Syndrome (AS) Day To Raise Awareness and Funding for AS Specific Research
DOWNERS GROVE, Ill., Feb. 13, 2013 /PRNewswire-USNewswire/ — The Foundation for Angelman Syndrome Therapeutics (FAST) is proud to announce their participation in the 1(st) Annual International Day of Recognition for Angelman Syndrome. On the 15(th) of February, families and friends around the globe will celebrate children affected by Angelman Syndrome and begin to expand recognition for the disorder and to help raise awareness and funding for research towards a cure.
Angelman syndrome (AS) is a genetic disorder caused by loss of function of the UBE3A gene located on chromosome 15. AS is characterized by developmental delays, epilepsy, and problems with motor coordination (ataxia) and balance. Individuals with AS rarely develop functional speech.
Ruby Tuesday has partnered with FAST to donate 20 percent of proceeds this Friday to AS research when diners present a flyer at participating restaurants. Roughly 100 locations nationwide are involved with the fundraiser. FAST has also launched the 15/15/15 Campaign urging supporters to donate at least fifteen dollars for research on chromosome 15.
“The Angelman community around the world is so excited to have this special day, to celebrate our children, to celebrate the tremendous strides in research, to raise awareness and much needed funding,” said FAST Chairperson Paula Evans. “We are a community full of hope and on February 15(th), we will have the opportunity to come together and shine a light on our children.”
Colin Farrell, famous award-winning actor and father to James, who was born with AS stated, “I’d like to take this opportunity to thank all those who will play their part in International Angelman Day on February 15th. It’s a really beautiful thing to mark this day as a celebration of our children and all they have achieved and as an opportunity to introduce more people to both the beauty inherent in and the trials faced by those with AS. Anything anyone can do to raise awareness is greatly appreciated. No gesture is too small. No such thing as the insignificant word or deed. I wish all the hardworking folks at FAST (http://www.CureAngelman.org) all the best with the endeavor and all the hard-working and hard-loving parents around the world a collectively successful and unified day.”
In the past, AS was thought to be untreatable. However, In February of 2012, FAST funded a human clinical trial on the efficacy of Minocycline in the treatment of Angelman Syndrome led by Dr. Edwin Weeber of the University of South Florida. This trial will conclude next month. Dr. Weeber’s preliminary results demonstrate that Minocycline treatment improved behavior, attention and communication in children with Angelman Syndrome. If these results are verified in the larger group at the end of the trial, expanded trials will need to be conducted to determine how Minocycline can be used in Angelman Syndrome. FAST is excited to work with groups in America and abroad to enable larger trials if warranted.
About Angelman Syndrome
Angelman Syndrome is a severe neurological disorder characterized by profound developmental delays, epilepsy, and problems with motor coordination (ataxia) and balance. Individuals with AS rarely develop functional speech. The seizure disorder in individuals with Angelman Syndrome can be difficult to treat. Feeding disorders in infancy are common, and some persist throughout childhood. Sleeping difficulties are commonly noted in individuals with Angelman Syndrome. AS affects all races and both genders equally and occurs in approximately one in 10,000 to 15,000 births. For more information about Angelman Syndrome, please visit http://www.CureAngelman.org.
The Foundation for Angelman Syndrome Therapeutics (FAST) is an all-volunteer organization of families and professionals dedicated to finding a cure for Angelman Syndrome through the funding of an aggressive research agenda, education, and advocacy. The Foundation is committed to assisting individuals living with Angelman Syndrome to realize their full potential and quality of life. FAST is run by an all volunteer staff and board who dedicate their time and expertise towards finding a cure for Angelman Syndrome. Our goal is to bring practical treatment into current medical practice as quickly as possible.
In addition to funding a human clinical trial on the Efficacy of Minocycline in the Treatment of Angelman Syndrome, over $360,000.00 in Post Doctoral Fellowship Grants, over $100,000.00 in FAST-Trac and Grant-In-Aid Grants, FAST has now launched the FAST Integrative Research Environment (FIRE) Initiative, bringing FAST’s investment in finding therapeutics for Angelman Syndrome to over 1.5 million dollars in two years.
FAST is a Section 501(c)(3) non-profit research organization.
To learn more about FAST’s mission and funding priorities, or to make a donation towards FAST’s research program visit www.CureAngelman.org.
SOURCE The Foundation for Angelman Syndrome Therapeutics (FAST)