What an awesome week!
When I started planning the first Idiopathic Hypersomnia Awareness initiative in early 2013 I couldn’t have imagined that it would end up reaching the number of people it does today. To give those of you that don’t know an idea of what IH awareness looked liked back then, there were just 3 IH Facebook groups; Idiopathic Hypersomnia, Idiopathic Hypersomnia Australia, and Idiopathic Hypersomnia UK and none of them had more than a few hundred people in them. The only non profit organisation in the world that represented IH was Hypersomnolence Australia. When you googled ‘Idiopathic Hypersomnia’ apart from research articles that were mostly behind paywalls there was very little information and worse it was often inaccurate. It was clear to me that IH needed a worldwide platform that brought people together from all over the world to lift IH up to a place it deserves to be. This year was the 8th IHAW. I am pleased to see that we are definitely getting closer where IH should be and the reason for its success is you!
Participating in the IHAW whether you take part in our projects, share your experience, help us with translations, attend a support group meeting, or interact (comments, likes, and share) with our social media it all contributes to helping the IHAW be a huge success. And what is success to me? It is more awareness and more support for people with IH and we have definitely achieved that.
Being a worldwide event means there is awareness happening literally 24/7 all week. I went to bed each night with social media buzzing. I was so excited to log on every morning to see what had been going on in the rest of the world while I slept. People have been sharing their stories, information posters, and the IHAW posts across numerous social media platforms, it is going to take me another week to catch up with it all but I’m looking forward to it.
The virtual support group meetings were such a huge hit. Most of them went for around 3-4 hours each! I attended meetings across 3 continents. It was so good to meet new friends and catch up with old ones. I’m so happy to be in a position where I can help representatives in the US and UK/Europe ensure that the meetings will be ongoing into the future (they will be in Oz/NZ too). Thank you to Jody King, Megan Leo, Toni O'Neill and Matt Baker for volunteering to do this with me. There will be details about these meetings on the IHAW social media.
It has also been awesome to see people get involved in the IHAW from countries where awareness and education is poor (or nonexistent). We had one lady join our UK/Europe support group meeting from Saudi Arabia. We now have our information posters translated into 11 different languages and we will be working on more over the next 12 months.
I believe the key to success is a unified voice under one banner and I think the success of the IHAW has shown this to be true. We encourage other people and organisations to join us. After all, we have similar goals and we champion this cause for the same reasons. If you are an organisation or individual and you would like to be involved in next year’s IHAW please contact us at firstname.lastname@example.org. Community input is important to us so we hope to get smaller groups together working on local projects. Planning starts around March so if you are an individual interested in getting involved come along to the virtual support group meeting in your area next March or reach out via email@example.com.
Hypersomnolence Australia, the hosts of the IHAW is a registered not for profit charity that charges no membership and receives no funding so achieving our goals for the IHAW requires support from the IH community. If you or your loved one has benefited from the IHAW or you think we have done a good job raising awareness and would like us to continue to do so at least at the standard we do now but hopefully on an even bigger scale please consider donating. No amount is too small, just $5 can make all the difference. https://www.paypal.com/au/fundraiser/charity/3567471. A huge thank you to those of you that have already donated, it is much appreciated.
Although the Idiopathic Hypersomnia Awareness Week has come to a close, don’t stop following our social media. We don't stop raising awareness. We continue to post content all year round. This will include details about virtual support group meetings and how you can get involved in next year's IHAW. Take care, Michelle Chadwick