HOW PARENTS/FAMILY MEMBERS CAN HELP
Get ready for February 15th!!!
Contact any Landmarks/Skyscrapers in your region and ask if they would honour those with Angelman syndrome on Feb 15th. Here are pics of Niagara Falls in Canada and Cleveland’s Terminal Tower (USA) – both lit up blue for International Angelman Day!
To raise awareness:
- ‘Wear an advertisement’! – a T-shirt, badge, bag, etc that promotes IAD and Angelman syndrome
- Make and distribute posters using the IAD logo and your child’s pic with a short outline of Angelman syndrome
- Send informative brochures about Angelman syndrome and your AS support organisation, to all the people involved in your child/sibling/relative’s life – their doctors, specialists, therapists, teachers, aides, carers.
- Approach your local newspaper/reporter to publish an article on your event and the background of IAD
- Send letters to local key figures/social leaders asking them to formally recognise IAD on Feb 15th
To raise funds:
- Always check FIRST with the organisation you are fundraising for, to ensure you are complying with their guidelines for fundraising
- Plan a fun fundraising event for your national Angelman Organisation – to rally support in your community and raise funds for your local AS organisation
- Look out for websites that provide ideas for successful fundraisers that would work well in your local community/culture/country
- Organise a fun community sports event such as a fun-run/walk, a cycle event, a Zumba marathon, etc. Be aware and informed of the serious safety issues involved in these events.
WHAT ORGANISATIONS CAN DO
- Networking is also promoting awareness. Send out a letter about current AS research to local university or institutions, or info packs on AS and your org to medical training schools, universities, training hospitals, pediatric groups, etc.
- Produce informative awareness material, eg posters, brochures, magnets, badges, T-shirts, etc. – to be made available for members/parents to raise awareness in their local communities
- Use this day as an opportunity for media awareness, targeted outreaches, and project launches. Plan, film and release videos of promotional interviews, collaborative meetings and family stories, backed by supportive comments from professionals.
For International Angelman Day 2014, Angelman Syndrome Ireland (ASI) created postcards that were sent to health professionals, medical practitioners, schools etc. To raise awareness, families were also encouraged to send the postcards to people in their community.
One side has a brief description of ANGELMAN SYNDROME and the other side talks about IAD and the European Angelman Alliance for research funding. Recipients of the postcard were invited to keep it for future reference.