International Angelman Day to be observed on Feb. 15
Resources for the annual event have been made available by ASF, FAST
Organizations around the world will come together Feb. 15 to observe International Angelman Day (IAD), a global effort to raise awareness, honor those living with the rare neurological disease and commemorate those who have passed away.
The annual initiative also seeks to encourage fundraising and support research for Angelman syndrome.
“International Angelman Day is a trigger to unite families and resources, to inspire collaborations within our networks, and to spread global awareness using the most current information,” the IAD website notes.
Started in 2012 by two Angelman parents, the inaugural event included 31 organizations and has grown in recent years to feature over 50 groups from more than 40 countries. Participating organizations each have different missions and operate independently, but come together in common support of Angelman patients and their families.
The date recognizes two important facets of Angelman. February is Rare Disease Month and the 15th day of February refers to the 15th chromosome. Genetic defects in chromosome 15 are the cause of Angelman, which affects about one in 15,000 people.
As part of IAD, interested persons are encouraged to raise awareness in their own communities and participating organizations have offered several ways to get involved.
“Because this is such a rare disorder, we need everyone to help us spread the word,” the website states.
The Angelman Syndrome Foundation (ASF) offers images that can be downloaded from its website and customized with a photo of a loved one with Angelman. Images can be shared in offices, schools, or on social media with the hashtag #IAD2023.
The foundation also offers worksheets for parents or teachers to use as a way of educating children about Angelman syndrome.
Other resources are offered through the Foundation for Angelman Therapeutics (FAST), a nonprofit that operates in the U.S., Australia, the U.K., Canada, Italy, France, Spain, and Latin America.
FAST also makes available customizable flyers and graphics that can be downloaded and used to raise awareness. FAST IAD T-shirts can also be purchased.
The organization also created the Dream Big video, wherein parents share their dreams for their child with Angelman. The link to the video can be shared as part of awareness efforts.
Additional resources can be found on the IAD website, including educational videos about Angelman, downloadable graphics, and ideas for getting involved, such as hosting a local event.
As a display of community support on Feb. 15, landmarks around the world will be lit up in blue, the color for Angelman awareness.
These efforts are led by families in the Angelman community who have approached local authorities about the observance. Community members are encouraged to reach out to local authorities about lighting up bridges, buildings, or other landmarks in their own communities.