Supporters Poised for International Angelman Day on Feb. 15
International Angelman Day is Feb. 15 and, around the world, about 50 organizations and scores of supporters will come together to bring attention to the neurological disorder and the needs of the half-million individuals thought to be affected.
Angelman syndrome (AS) is a complex genetic disease that can result in seizures, developmental delays, walking and balance disorders, and gastrointestinal problems. Many of those with the disorder are left with little to no ability to speak.
International Angelman Day began in 2012 with 31 participating organizations. The day, which aims to increase awareness about the disease and honor patients and their families, is also used for fundraising, educating, highlighting ongoing research, and mobilizing advocates to address issues in the Angelman community.
The date for the observance is significant because it refers to the 15th chromosome — the one that Angelman affects. The month is noteworthy too, because Rare Disease Day also is observed in February, on the 28th.
As part of the day’s observance, the Foundation for Angelman Therapeutics (FAST), which has affiliates in Argentina, Australia, Canada, France, Italy, Spain, the United Kingdom, and Latin America, is offering downloadable resources. These include a flyer that can be personalized with a patient’s photo and some biographical detail, an International Angelman Day Facebook cover, a standard flyer, and Twitter and Instagram templates that can be customized. Supporters also are encouraged to share a “Better Days” video about Angelman treatment developments from last year’s FAST Global Summit & Gala, which was held both in person and virtually in December.
For its part, the Angelman Syndrome Foundation (ASF) is participating in #IAD2022 by offering educational worksheets and games that can be used in schools to educate students and others about Angelman.
The nonprofit organization also is asking supporters to sign up for ASF Walk, a nationwide fundraiser set for May to benefit ASF research and programming. Also, spots are still open for this year’s Bank of America Chicago Marathon fundraiser, set for Oct. 9. The ASF will field a team of runners called the Windy City Angels who will support the organization.
In the U.K., the group Giving Voice will host a “Twitter takeover” that will feature Angelman parent Tracey Campbell and speech and language therapist Jenny Pemberton.