To mark Feb. 15, International Angelman Day, the Angelman Syndrome Foundation (ASF) has compiled a list of f 15 simple ways to help raise awareness for Angelman syndrome worldwide and in your hometown:
- Ask a local pediatrician if he or she is aware of Angelman syndrome. Help doctors learn about the disease or find out more about it by sending them educational links, such as Facts about Angelman Syndrome.
- Participate in one of the Angelman syndrome research studies listed here. These may involve phone interviews, surveys, mailing in, information, traveling to other cities, blood tests, electroencephalography (EEG) and other medical procedures.
- Register for an ASF Walk — a fundraising event to support Angelman research and services to families of individuals with AS) and invite your friends to join you.
- Ask your child’s school if you can make a presentation about the disease on Feb. 15.
- Send a personal letter to the editor of your local newspaper about International Angelman Day. You can request a sample letter from ASF at [email protected].
- Inform the ASF Individual Education Plan (IEP) Bank about your child’s goals and objectives, and help other families plan a more meaningful IEP for their loved ones. This is a platform for parents and IEP team members to exchange information in planning a student’s IEP. See ASF’s Educational Resources for more information.
- Contact therapists, teachers and social workers in your network about the Series on Angelman Syndrome Behaviors and how this information can help a child or student with Angelman. The series advises those who care for or work with Angelman patients, and explores the root causes of challenging and aggressive behaviors and identifies possible solutions. The series is made up of modules addressing social and environmental influences, mental health and cognitive issues.
- Ask your friends to donate to your personal fundraising page for the ASF Walk or other fundraiser you might be organizing. For instance, if you plan to attend the Bank of America Chicago Marathon 2018, on Oct. 7, you might want to ask your friends to donate to that personal fundraising page as well.
- Send a “thank you” note online to ASF-funded researchers to show your appreciation, and maybe tell them a little about how you’ve been supporting them.
- Send a valentine to your local school, workplace or house of worship filled with facts about Angelman. Check the ASF’s Pinterest board for creative ideas.
- Download and print the Facts about Angelman Syndrome handout and give it to those who don’t already know about Angelman and want to know more.
- Submit a photo from a past ASF event to [email protected] so that it can show up on ASF’s Facebook page as a Throwback Thursday item.
- Considering buying one or more items available at the ASF store to help promote Angelman awareness.
- Start planning to attend the 2018 Research Symposium, taking place Aug. 6-7 in Chapel Hill, North Carolina,
- Share ASF’s work with friends and family — in person and maybe through social media, if you use these channels.
You can also raise learn more about the disease by reading Angelman Syndrome News.
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