What can you do ?

  • Most families are already experts in AS; still brush up your knowledge and make sure you have the facts at hand to avoid any misquoting - check our website for regular updates.
  • Start posting on your socials about International Angelman Day now with the popular hashtags #CureAngelman and #MyReason
  • Use a temporary International Angelman Day  frame for your profile picture 
  • Ask for donations; direct to our website or you can now fundraise via Facebook with no associated fees (be sure to select FAST Australia) 
  • Share the popular Youtube clip (left) in local social pages and encourage others to do so asking if they know someone who may have Angelman syndrome. Ask your school to post on their social media.
  • Subscribe to our news updates!
  • Decide who you want to approach about the story (TV, Radio, Newspaper, Local Newspaper, E-media, local celebrities or politicians)
    • Be clear on what your message is (see suggestions below)
    • Send out a photograph with your email and/or suggest a photo opportunity
    • Be persistent (follow up after your initial contact)
    • Be prepared for possible interviews
  • Check back with us for additional guidance and support, if needed

INTERNATIONAL ANGELMAN DAY- Media template suggestion

This Friday is International Angelman Day. Never heard of it? That is completely understandable: it is rare. (Insert child’s name) is one of just 1,500 individuals in Australia affected by the rare genetic condition called Angelman Syndrome. The thing is, in Australia our diagnosis rate falls well below the numbers in countries such as the United Kingdom and United States.

Despite the rareness of the condition, if you have met someone with the syndrome it’s highly likely you would recognise it again. (Child’s name) is renowned for (his/her) happy disposition and huge smile. (Name) has infectious laughter and excitability that is expressed with every inch of (his/her) body, the hugs are so sincere that (he/she) is rarely forgotten! Many of our angels are attracted to water and love anything to do with water.

*Remove the option and any statements that don’t apply, as well as this note. Option 1:

(Name) struggles to communicate as (he/she) cannot speak. (He/She) has a few words but (he/she) cannot put sentences together to communicate effectively and because (he/she) has problems with coordination sign language is not an ideal option. This is without a doubt the most challenging aspect of the syndrome for us; even above (his/her) seizure disorder.

*Remove the option and any statements that don’t apply, as well as this note. Option 2:

(Name) struggles to communicate as (he/she) cannot speak. As (he/she) has problems with coordination so sign language is not an ideal option. This is without a doubt the most challenging aspect of the syndrome for us; even above (his/her) seizure disorder.

Angelman syndrome is often misdiagnosed as cerebral palsy or severe autism. We have an amazing community of families in Australia where we can share our struggles but also the hard earned milestones as well as the types of targeted therapies that can really make a difference in our children’s lives.

Recent scientific advances offer real hope for a treatment for Angelman Syndrome; we expect to see gene therapy trials in the next few years.  Even as recently as five years ago, families were told a cure was not possible.  Today can begin to imagine our children with AS living seizure-free lives, able to walk and eat without difficulty and speak those magical words all parents long to hear… ”I love you”. 

So on this International Angelman Day we are not only trying to raise awareness but we are trying to put a call out to families who may be looking for a diagnosis for their loved one, or think that the diagnosis they have just doesn’t fit, perhaps a child diagnosed as autistic that is overly social, or has mild physical symptoms of cerebral palsy but little or no speech. Visit CureAngelman.org.au for more information on the signs.

Issued: xx February, 2019.For Media Enquiries/Interview please contact: info@cureangelman.org.au


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