At times during the year, we will be inviting special guests to our monthly Living with IH community catch ups to speak on relevant topics with the aim of helping people better manage living with Idiopathic Hypersomnia. There will be 2 parts to our special guest presentation catch ups. The first will be a presentation and Q&A and after that, we will have our usual LWIH catch up for people diagnosed with IH (and also parents of minors diagnosed with IH) where we will talk about the presentation and other relevant topics.
To register for our Living with IH community group catch ups you will need to fill in this brief form. You will only need to do this once. Filling in this form will trigger invites to each of our future meetings. You can opt out any time.
Click here to register: https://forms.gle/6D68ftCp1Htou1kW8
Answers to some common questions.
1. While family and friends and generally not allowed at our usual Living with IH catch ups they are more than welcome to join us for our special guest presentations.
2. For privacy reasons we do not record our usual Living with IH catch ups. We do however try to record the special guest presentation section of the meeting (you don't have to have your cameras on for this section). If the presentation is recorded a link to the recording will be sent to everyone who has registered for our living with IH community group within a few days of the presentation.
3. If you can't make it to one of our special guest presentations but you have a question/s you would like to ask the speaker let us know and we will do our best to ask on your behalf. You can send your questions to me (Michelle) at info@hypersomnolenceaustralia.org.au
4. We will still have a usual Living with IH catch up after the special guest presentation for those that would like to stay and chat. Note: this section won't be recorded but as usual you will be required to use your cameras.
Our first special guest speaker was Jessica Turton. Jessica is a qualified practicing dietitian and nutritionist, Phd Student, and founder of Ellipse Health.
Thank you to everyone that came along to this presentation. I hope you found it helpful. Also, a special thank you to those of you that stayed after the presentation for our usual Living with IH catch up. Sharing your experiences and giving your feedback not only inspires and helps me in the work that I do it helps others too.
The video of our Diet and Nutrition with Jessica Turton presentation has been uploaded to our website. https://www.hypersomnolenceaustralia.org.au/videolibrary
You will also find it on our YouTube channel. https://youtu.be/RpFWC33k8xw
In our chat (after Jessica's presentation) we talked about what topic we should invite a speaker to talk about next and ‘availability of/access to’ medication was mentioned. This topic was discussed at our Idiopathic Hypersomnia Education Day last April (there has been no change to this situation since then). If you haven’t already, please check out the videos from our education day. They include up to date information re: what IH is, what is happening with regards to research (both presentations are by French IH and narcolepsy expert Prof Yves Dauvilliers), and also access to, and lack of, medications in Australia and the challenges and potential solutions. And much more; https://www.hypersomnolenceaustralia.org.au/ihnarcolepsyeducationday Edit: since posting this blog post we have put some information together with regard to 'How to access Xyrem (Sodium Oxybate) in Australia and and why is Xyrem not TGA registered (approved) or PBS listed?' You can find that information here.
We do not receive funding and charge no membership. We have been able to make the videos of our presentations available for free via the generosity of our few loyal supporters (thank you to Suzy Munns for helping with this latest video). If you can make a donation to help support our efforts - which will lead to more videos and hopefully another education day in a city near you, please do so here, no amount is too small. All donations over $2 are tax deductible.
The Trustee for Hypersomnolence Australia is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2013. It is covered by Item 1 of the table in section 30-15 of the Income Tax Assessment Act 1997 ABN: 19662120036
If you have any suggestions for the next topic for our special guest series please let me know.
Michelle