Rare Disease Report

Colin Farrell and Other Celebrities Gather to Raise Awareness for Angelman Syndrome

DECEMBER 06, 2016
Andrew Black
Actor Colin Farrell has had a busy month, with his new movie Fantastic Beasts and Where to Find Them, a Harry Potter spinoff, releasing in theaters. But no matter his schedule, there is one date on his calendar he marks ‘not available’ and that’s because he is attending the Foundation for Angelman Syndrome Therapeutics (FAST) fundraiser in Chicago.
 
The 2016 FAST Global Summit on Angelman Syndrome (AS) was a two-day event that included scientific and educational seminars on AS research and the fundraising FAST Gala which included guest speakers.
 
Colin attends the AS fundraiser annually. His 13-year-old son was diagnosed with the rare condition at age 2. Funds raised by the gala will go towards more research, including gene therapy studies.
 
Colin Farrell wasn’t the only celebrity in attendance. Former childhood Nickelodeon actor Josh Peck was also there to show his support of AS awareness. Josh’s manager, Sam Maydew, has a son diagnosed with the condition. 
 
This was Josh’s first time at the event but said in a news channel interview, he found it exciting and gave a lot of hope to the families in need of a cure.

Jai Courtney, Retta and Zachary Levi also attended the gala. Vincent D’Onofrio, Rosie Perez, Wilmer Valderrama, Jesse Lee Soffer and Richard Marx are just a few others who have attended.

About FAST

The Foundation for Angelman Syndrome Therapeutics (FAST) is a Section 501(c)(3) nonprofit organization singularly focused on funding research that holds the greatest promise of treating Angelman syndrome. Paula Evans, the mother of a young girl with Angelman syndrome, founded FAST in 2008. The foundation is based in Downers Grove, Ill.
 
FAST is the largest, non-governmental funder of Angelman-specific research. FAST has brought together more than two dozen scientists from multiple universities and pharmaceutical companies. The team is called the “FIRE” Consortium: FAST Integrative Research Environment. As FAST's FIRE team races toward a cure, their efforts are gaining significant attention. The Marnier-Lapostolle Foundation recently awarded a $5.8 million grant to FAST. The gift is the largest private grant ever made to Angelman research. Inspired by a family member who has a child with the disorder, the Marnier-Lapostolle Foundation conducted an intense and highly competitive process before investing their money in FAST. The family that created Grand Marnier founded the Marnier-Lapostolle Foundation.
 
FAST raised more than $1.2 million at their annual gala, up from $417,000 the previous year. FAST is working to raise an additional $1.3 million before the end of the year to fund the next critical phase of research involving gene therapy. FAST’s goal is to finalize the scientific foundational work necessary to test therapies in human clinical trials within two years or less. To donate to FAST, visit CureAngelman.org/donate.
 
 
For more information, visit http://cureangelman.org/

About Angelman Syndrome

Angelman syndrome (AS) is a neuro-genetic disorder that occurs in approximately 1 in 15,000 live births. It is due to a mutation of a gene UBE3A found on chromosome 15. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with AS will require life-long care. Two striking features of these patients are their ‘happy’ demeanor and their susceptibility to seizures.
 
There is currently no specific treatment for AS. Most persons will require medication to control seizure activity and/or any other physical system associated with the disease. Various forms of physical, occupational, communication, and/or behavior therapies are also common.
 


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