Shared mission to rally support for International Angelman Day

Angelman syndrome affects estimated half-million people globally

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by Mary Chapman |

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Supporters globally are poised for International Angelman Day (IAD), set aside annually on Feb. 15, to call attention to Angelman syndrome and the 500,000 people globally estimated to be affected by the complex neurological disorder.

In addition to spreading awareness about Angelman, the event seeks to unite and mobilize Angelman families and organizations around a shared mission and to memorialize those who have passed away from Angelman complications. In addition, the initiative seeks to encourage fundraising and support disease research.

The inaugural event, started in 2013 by two parents of children with Angelman, included 31 organizations. Today, the initiative includes more than 50 groups from over 40 countries. While the organizations have differing structures and objectives, they unite each year to mark the global event.

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Feb. 15 selected because Angelman is caused by defects in chromosome 15

The annual date recognizes February as Rare Disease Month and the 15th day of February was selected for Angelman because the disease is caused by genetic defects in chromosome 15.

The event again features “Light Up Blue,” a campaign in which Angelman families get local governments and authorities around the world to illuminate landmarks in blue, the color representing IAD. Past lightings included, for example, Niagara Falls in Ontario, Canada, and the Dr. Martin Luther King, Jr. Memorial Bridge in Fort Wayne, Indiana.

Resources for IAD participants include a social media profile frame, cover photo, awareness poster, and a logo in different languages. Customizable resources are also available, including an Angelman awareness post, home yard sign, landmark sign, and awareness flyer.

Elsewhere, the Foundation for Angelman Syndrome Therapeutics (FAST) is offering shareable educational facts and insights as well as videos and downloadable social media resources to be used with the hashtags #IADFeb15 and #AngelmanSyndrome.

Another way to commemorate the day is through a FAST Athlete 15-day challenge in which participants engage in a number of physical activities, such as pushups or dancing, and share their progress.

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Make snow angels to help support foundation in Canada

Angelman Syndrome Foundation Canada (ASF Canada) is presenting a Snow Angel Challenge that seeks to raise $10,000 to support the organization while embracing the “winter spirit.” It involves creating a “snow angel” in snow while donning summer attire, posting the awareness event on social media, and getting others to do the same. The group asks each participant to donate $15 or more to help fund research and programming.

Creating a snow angel calls for lying on one’s back in fresh snow and moving arms up and down on the snow, and the legs from side to side, to form the shape of an angel.

“Let’s turn the snow-covered landscapes into a canvas of compassion and support,” the organization states on a webpage about the challenge. “Spread the love, create awareness, and let’s make this International Angelman Day unforgettable!”

Like other organizations, including the Angelman Syndrome Foundation, ASF Canada is also presenting a Light It Up Blue campaign for landmarks throughout Canada, and offering a campaign toolkit.