Angelman Syndrome Foundation Combines Forces with World-Wide Angelman Syndrome Organizations to Raise Awareness for Rare Neurogenetic Disorder
AURORA, Ill., Feb. 12, 2024 /PRNewswire-PRWeb/ -- Angelman Syndrome Foundation, a non-profit representing the rare and severe neurogenetic disorder Angelman syndrome, is participating in "Light It Blue," a world-wide campaign in which well-known architectural landmarks are simultaneously displaying blue lights on February 15 to celebrate International Angelman Day.
Angelman syndrome (AS) affects one in 15,000 live births, or 500,000 people worldwide. People with AS have intellectual, developmental and physical impairment. Those diagnosed struggle to walk and often suffer debilitating seizures. Daily activities such as talking, eating and dressing are difficult, if not impossible. Angelman syndrome has no cure.
On February 15, many recognizable buildings across America will light up in blue to put a public spotlight on the rare AS.
Participating buildings include:
- Baltimore City Hall (Baltimore, Md.)
- City Hall Clock Tower (Yonkers, NY)
- Davenport Skybridge (Davenport, Iowa)
- Dr. Martin Luther King, Jr. Memorial Bridge (Fort Wayne, Ind.)
- Dublin Link Bridge (Dublin, Ohio)
- France Avenue (Edina, Minn.)
- I-35 W Mississippi River Bridge (Roseville, Minn.)
- James S. McDonnell Planetarium (St. Louis, Mo.)
- MEET (Las Vegas, Nev.)
- Milwaukee County Historical Society (Milwaukee, Wis.)
- Pennsylvania State Capitol Complex (Harrisburg, Pa.)
- Terminal Tower (Cleveland, Ohio)
- The Metropolitan (Rochester, NY)
- The Peace Bridge (Buffalo, NY)
- Wells Fargo Duke Energy Center (Charlotte, NC)
Architectural landmarks in Austria, Canada, Portugal, Spain and many more countries around the world will also participate.
"Individuals with AS require life-long care but can live long, happy lives," said Amanda Moore, CEO of Angelman Syndrome Foundation. "Awareness is an essential component of raising the funding needed to develop treatments, therapies and an eventual cure."
More than 50 support organizations across 40 countries have missions dedicated solely to Angelman Syndrome. Treatment for people living with AS could offer a chance at a better quality of life, but greater awareness and funding are needed to make treatments a reality.
"Seeing the world's major landmarks light up in honor of Angelman syndrome keeps hope alive for our community," said Stephanie Azout-Chaki, Chairperson of Foundation for Angelman Syndrome Therapeutics Latin America. "The more people who are aware that Angelman syndrome exists, the more lives we can impact."
Despite their struggles, those living with AS are known for their overall happy and excitable demeanor.
To learn more about Angelman syndrome, visit angelman.org.
ABOUT ANGELMAN SYNDROME
Angelman syndrome is a rare neuro-genetic disorder that occurs in one in 15,000 live births (or 500,000 people worldwide). Common signs and symptoms, such as walking and balance disorders, gastrointestinal issues, seizures and speech impairments, usually appear in early childhood. It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother. It shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome. It has no cure.
ABOUT ANGELMAN SYNDROME FOUNDATION
The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure. To learn more, visit Angelman.org.
Media Contact
Amanda Moore, Angelman Syndrome Foundation, 1 317-514-6918, [email protected], https://www.angelman.org
SOURCE Angelman Syndrome Foundation
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