Hypersomnolence Australia turns 5! What's new?
Every year we say we have come a long way and I'm proud to say this year has been no different. I never expected HA to make the impact it has in such a short time. Some things have taken a little longer to achieve than others but we have come to appreciate that all organisations need time to grow and that with time comes experience and knowledge. So What's New? We are so excited to have a brochure for Idiopathic Hypersomnia (IH). Our brochure was written by me however it was vetted by Professor Ron Grunstein, MBBS, MD, PhD, FRACP and international Idiopathic Hypersomnia researcher Professor Karel Šonka MD, DSc. We have already started to send hard copies of it to sleep clinics and sleep specialists across Australia. Give it a few months and if there is a doctor diagnosing IH they should have a brochure to give to their patients. Every doctor that people have added to their IH patient survey will receive at least 25 brochures with the option for them to request more for just the cost of postage. We are also excited to have launched our NEW WEBSITE last month. I would like to say a special thank you to all of our loyal supporters that have waited so patiently for us to finally have a website and brochure that is worthy of Idiopathic Hypersomnia. It has taken us a long time but we have learned so much along the way that I'm are actually glad that we didn't rush into either project. We have made valuable connections within the sleep medicine community including with each of the scientists throughout the world that have studied Idiopathic Hypersomnia the most. This ensures all of our information is up to date and accurate. Our website One of the first things you will notice is our new logo and colours. If you don’t identify with the person in our logo you may identify with the women in the video on our home page – is this how you feel every day? We decided to feature patient perspectives on our home page. When I first started the Idiopathic Hypersomnia Awareness Week many people with IH didn’t speak openly about their condition. It was not uncommon for people with IH to have never met another person with IH (either in personal or online) and most people hadn’t ever read a story written by someone with IH either. When we shared some stories in 2016 they really struck a chord. We still get positive feedback about it. People have told me that seeing stories they relate to has helped them “come out”. We hope our ‘home’ page really will feel like home to people diagnosed with Idiopathic Hypersomnia. What’s ‘under the hood’
We have a button on the top right of our home screen and various other links throughout our website to our IH brochure. This is a great resource for people with IH to help others understand. It was written by me and has been vetted and is endorsed by Professor Ron Grunstein, MBBS, MD, PhD, FRACP and international Idiopathic Hypersomnia researcher Professor Karel Šonka MD, DSc.
Our blog will replace our newsletter so if you would like to keep up to date with our news there is a quick and easy “subscribe now” form on our “news” page. There is never likely to be more than a few news items per month (perhaps a little busier towards the IH Awareness Week in September and much quieter over December and January). You can unsubscribe at any time. I am uploading some of the blog posts from our old website and will be adding some new ones over the next few months.
You can share your patient perspectives or check out others. If you would like to share your personal story or other patient perspective on our website send it to firstname.lastname@example.org You can remain anonymous if you wish. We are interested in all forms of expression, from written to visually creative work so if you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience with Idiopathic Hypersomnia we would love to share it.
We have a “Get Involved” page that has information about how you can help make a difference… and no its not all about asking for donations although we are a charity that receives no funding and we also do not charge membership. Now that we have this great website we are going to need funds to keep it alive. We are also going to need funds to continue to print and send out our awesome brochures! Please consider making a small one-off donation. No amount is too small. And all donations over $2 are tax deductible!
And of course we have a new home for the Idiopathic Hypersomnia Awareness Week! I have uploaded summaries of all the previous Awareness Weeks and I have a page ready for this year’s event. Click here if you are interested in becoming an IHAW ambassador for more information.
I would like to take this opportunity to thank all of our supporters. I would also like to express my sincere gratitude to the clinicians and scientists that are passionate about solving the mystery of Idiopathic Hypersomnia and who give me so much their time and support. I also appreciate the time given to me by Australian clinicians and scientists, particularly A/Professor Nate Marshall and Professor Ron Grunstein of the Woolcock Institute. Nate Marshall is the first (and only) Australian scientist that has reached out to me with a genuine interest in IH. I was invited to Sydney by Nate in February to take part in a Clinical Trials Network meeting. It was a great opportunity to talk about IH and to hear about possible clinical trials and how they are developed. I met researchers and clinicians dedicated to sleep research and patient care including Professor Grunstein who I had only communicated with via email up until that point. While I was pleased to have our IH brochure vetted and endorsed by international IH clinician-scientist Professor Karel Šonka it means a lot to me to have an Australian clinician-scientist also vet it considering the lack of attention IH gets from the sleep medicine community here. Professor Grunstein is a distinguished and well respected leader of sleep research. He was the first specialist appointed to a full - time position in sleep medicine in Australia in 1988. He was President of the Australasian Sleep Association 1994-1997. He is also recognised as a world leader in his field, having been the first person outside of North America to win the prestigious Nathaniel Kleitman Distinguishable Service Award from the American Academy of Sleep Medicine in 2011. He is also the only Australian to serve as President of the World Sleep Federation (2007-2011). I am very grateful that he took the time to go over our IH brochure. IH is an often misunderstood sleep/wake disorder. Misdiagnosis is unfortunately common. There are a number of reasons for this, some of which I cover in my IH review (also vetted by Professor Karel Šonka). One reason is a lack of education and training so if there is a doctor (or anyone else) that disputes the content of our brochure they are more than welcome to take it up with Professor Grunstein (or Professor Šonka). There are busy times ahead for me. I became a director of Sleep Disorders Australia (SDA) last October (2017). I am responsible for online Public Relations. I look forward to working with people from other sleep disorder communities so that I can help them raise awareness of their sleep disorders like I have done for IH. My appointment is also a great opportunity for the IH community. HA has played a significant part in raising the profile of IH worldwide. My next step is to focus on advocacy. My role with SDA will enable me to achieve this much more effectively. There is so much more work to do for IH in Australia and internationally so my commitment to IH via HA is as strong as ever.
Best Michelle Chadwick