Raising Consciousness for International Angelman Day
In a world where understanding and acceptance of disabilities are still evolving, the color blue serves as a powerful symbol of unity for the Angelman syndrome community. This condition, which requires public awareness and education, affects not only the patients but also their caregivers, family members, and supporters.
International Angelman Day, an annual celebration established by Sarah Roarty and Carol Ann Walkowski, who is based in the United States, was co-founded with the aim of raising awareness, promoting research, and providing educational resources. This day serves as a beacon of hope for those living with Angelman syndrome and their families.
Ursula Christel, an artist and advocate for greater inclusion from New Zealand, has been a driving force behind International Angelman Day. Christel, who is the mother of a son living with Angelman syndrome named Andrew, is committed to creating a community that provides support, understanding, and hope.
One family, for instance, plans to distribute flyers explaining Angelman syndrome and how their young son Jude can best be supported in the community. This proactive approach is essential in addressing the lack of understanding and the uncomfortable stares and silence that often accompany disabilities.
Emily Ladau, a disability rights activist, emphasizes the importance of making ideas about disability accessible to the world if the disability community wants a world that is accessible to them. By raising awareness, we can foster a more inclusive and understanding society.
Contributing to the Global Angelman Syndrome Registry is another meaningful way to have a direct impact and raise awareness on behalf of loved ones. This registry is crucial for research, lobbying, and advocacy efforts. However, it's important to note that the registry does not provide medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider.
Raising awareness can also be done through social media, advocacy events, or simply wearing blue on International Angelman Day. Some families are taking it a step further by baking blue cupcakes and cookies to hand out at workplaces, at their children's swimming schools, and to their therapists and neighbours.
Every story that's told and every voice that's raised brings us closer to a brighter future for those living with Angelman syndrome. By working together, we can create a world where everyone is understood, accepted, and celebrated.
