International Angelman Day: Why Feb. 15 matters for families
'We see you, and we're in this together,' says mom and foundation CEO
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Feb. 15 is International Angelman Day (IAD), an annual event that brings together advocates worldwide to raise awareness and support people affected by Angelman syndrome.
IAD was started in 2013 by Angelman parents who saw a need for more connection and support for the rare disease, which is caused by mutations in a gene located on chromosome 15.
“International Angelman Day started because families needed connection,” Amanda Moore, CEO of the Angelman Syndrome Foundation (ASF) and mother to Jackson, a nine-year-old with Angelman syndrome, said in a statement to Angelman Syndrome News. “Before social media and global collaboration were what they are today, many families felt isolated. IAD became a way to say: we see you, and we’re in this together.”
IAD is celebrated in dozens of countries, with more than 50 advocacy organizations involved, according to the Foundation for Angelman Syndrome Therapeutics (FAST).
This year, advocacy groups like ASF and FAST are encouraging the community to spread the word about Angelman, both in person and on social media. The groups have created a variety of resources for advocates to use to help others understand what Angelman syndrome is and how it affects families.
Awareness helps in many ways
“Raising awareness isn’t just about visibility — it’s about understanding, access, and dignity,” Moore told Angelman Syndrome News. “For families like mine, awareness can mean earlier diagnosis, better care, stronger school supports, and more informed care providers. It helps caregivers feel less isolated and ensures our loved ones are seen for who they are, not just their diagnosis.”
Increased awareness “also fuels research, drives policy change, and reminds the world that individuals with Angelman syndrome deserve full, meaningful lives supported by an informed and compassionate community,” Moore said.
Angelman organizations are encouraging advocates to wear blue and to campaign for local leaders to light up landmarks in the color. Moore encouraged advocates to take whatever action they can to spread the word about this year’s IAD.
“What excites me most is seeing our community show up together — families, clinicians, advocates, and supporters — all using their voices in their own way,” Moore said. “Whether it’s sharing a story, wearing blue, hosting a fundraiser, or educating a classroom or lighting up the town blue-every action adds up. My hope is that these initiatives spark real conversations, bring new people into the community, and ultimately translate into sustained support for research, clinics, and lifelong services.”
IAD is also a call to action, urging for more research investment, stronger clinical care, and expanded support for families, according to Moore.
“For families like mine, progress isn’t abstract,” Moore said. “It’s safer nights, better communication tools, access to therapies, and the hope that science will continue to move forward. Awareness leads to action—and action changes lives.”
Angelman syndrome causes abnormalities in neurological development. People with the disorder typically have limited ability to communicate and motor impairments. Most people require lifelong care, and managing the disease can take a toll on families.
“One of the biggest truths I’ve learned is that strength looks different here — and it’s everywhere,” Moore said. “Our families are navigating complex medical, educational, and caregiving systems every single day, often quietly and without recognition. And yet there is so much joy, resilience, and love. This community has taught me that progress happens when we listen to lived experience and lead with empathy, and that no one should ever have to do this alone.”
Moore said people who aren’t directly affected by Angelman can participate in IAD. The most important thing is that community members are willing to learn and amplify the voices of affected families, she said.
“Take time to understand Angelman syndrome, share trusted resources, and help spread accurate information,” Moore said. “Support organizations doing the work — through donations, advocacy, or volunteering — and most importantly, see and include individuals with Angelman syndrome in your schools, workplaces, and community. Awareness is about action, and even small acts of support can have a lasting impact.”
