March 31st 2017
With your help we have reached the half way mark!
We would like to thank all our donors to our Help us change the prognosis campaign. Fundraising without a budget isn’t easy. It has taken a lot longer to reach the half way mark than we had hoped or anticipated but we will not give up. We believe that everyone with hypersomnia, particularly with Idiopathic Hypersomnia deserves to have resources and support and to be represented adequately and professionally. The only way that Hypersomnolence Australia can continue to do the work we do and to do more is with a purpose built website (scroll down to read about our plan!) so we will continue to work hard until we reach our goal.
One of our fundraising projects is the Peoples Choice Lottery. 100% of the proceeds from all tickets we sell go directly to our Help us change the prognosis campaign. Last year we raised $444.00 for our campaign. The Lottery has started again. The tickets are just $2 each and the prize pool is worth over $360,000! Tickets are on sale until 31st August the final prize draw is on 4th October 2017.
Please consider buying a ticket and sharing the link with your friends and contacts. And don't forget to share our campaign too!
We appreciate the people that have so generously donated to us because they believe in the work that we do, and we are grateful for the people that have donated to us that may not know what we do however they have felt moved by what they heard.
We have been inspired by the support we have received from people all over the world. We have been reminded that the work we do is vital to not just people with Idiopathic Hypersomnia, but also to people with Narcolepsy, Sleep Apnea and other causes of excessive daytime sleepiness. There are many that people struggle everyday to stay awake and alert. Not all of them have Idiopathic Hypersomnia however many of them find their way to Hypersomnolence Australia desperately looking for advice and support because there really isn’t a lot out there. We provide a valuable resource and are aware that the concept of our new website will provide people with support and information not currently available so we will be continuing with our campaign until we reach our goal.
With your help we will change the prognosis.
How can you help?
Scroll down to the section “What's in it for you?”
An average person sleeps 8 hours a night which means, if they live to the age of 75 they will spend one third, or 25 years of their life asleep. Imagine spending as much as 50 of your 75 years asleep and the remaining 25 years fighting to wake up and struggling to stay awake! For many people with the rare neurological sleep/wake disorder Idiopathic Hypersomnia this is their reality.
People with Idiopathic Hypersomnia are literally consumed by sleep. What makes Idiopathic Hypersomnia so unique and so difficult to treat is that there is no obvious cause for this excessive need for sleep because unlike in other sleep disorders the sleep quality is normal.
Very little is known about the cause of Idiopathic Hypersomnia so there is no cure, there are no medications specifically approved and the medications that are used to counter the daytime sleepiness are rarely effective long term. Unfortunately there are no medications that assist with the extreme difficulty waking up or the sleep drunkenness that many people with Idiopathic Hypersomnia find so difficult to manage.
Idiopathic Hypersomnia is a lifelong debilitating disorder, often profoundly affecting education, employment and relationships. It typically begins as a teenager or young adult however an accurate diagnosis unfortunately usually doesn’t come until much later. Being diagnosed with Idiopathic Hypersomnia provides sufferers with some relief. They can finally prove to their critics that they are not lazy, that they do not choose to sleep excessively and that they do not do anything to contribute to their sleepiness. However the prognosis clearly is not good and finding this out can be very confronting, and very lonely. Along with the support and understanding of family, friends and doctors people with Idiopathic Hypersomnia need help and practical support to manage their day to day lives.
But there’s a problem
Hypersomnolence Australia is dedicated to advocating, raising awareness, providing education and support for Idiopathic Hypersomnia. It is our goal to not just change the process to diagnosis but also the level of care and services available to patients post diagnosis. We do this via our website and social media but here’s the problem. Our current website was built by ourselves from a simple do it yourself blog template. We have desperately outgrown its capabilities. We provide information and support to patients all over the world but we are struggling to keep up with the demand with the limited resources we have.
Here’s what we’re doing about it
Our plan is to work with website developers to create a purpose built website. Our goal is to provide much needed advice and information based on the concerns that patients have raised with us directly and via our patient survey. This will include information pertaining to employment, school and education, support services, grief and psychological resilience, health and wellbeing, family and relationships, advice on how to make lifestyle adjustments and other lifestyle tips to help make the most of managing life with Idiopathic Hypersomnia. It will also include up to date information on research, treatment options and links to relevant medical information. We will be working with a variety of health care professionals to ensure we provide a broad range of quality information.
We also plan on working with professionals to put together an information brochure with the aim to distribute them to relevant doctors and health care professionals and patients.
You Can Join Us - Help us change the prognosis!
Hypersomnolence Australia is a non-profit organisation. It is managed by a very small team of volunteers who also happen to be patients themselves. Hypersomnolence Australia receives no funding. We manage to survive on the generous donations of our supporters. To fund our goals and enable us to continue to support the Idiopathic Hypersomnia community we need $6000.00. This money will enable us to have a purpose built website and information brochure designed by professionals. It will also go towards the printing and postage costs of the brochure.
Professionally designed purpose built website $5150.00
Price includes 12 months hosting fees
500 professionally designed DL A4 folded double sided information brochures
cost includes printing and postage costs to relevant recipients $850.00
Any money raised above our target will go towards the ongoing costs of running and maintaining our website as well as the cost of printing and posting more brochures as needed. If we are fortunate enough to raise well above our target the money will go towards much need database software. Hypersomnolence Australia holds the only patient registry of people diagnosed with Idiopathic Hypersomnia in Australia. The patient registry is used for the purpose of aiding research and to assist us to identify key areas of concern that need addressing. It now has over 200 records and the numbers continue to grow. Like our current website our database was built with very minimal resources. As a result it too has limitations that we need to overcome to enable us to continue to record and maintain this vital information.
What's in it for you?
For all donations of $25 or more you will receive a 12 month supporter subscription. Supporters will receive our quarterly Newsletter and other periodic e-Bulletins as well as full access to our exclusive supporter’s area on our new website. You will also receive a copy of our new full colour brochure. We will also send a copy of the brochure and our fact sheet to a doctor or other nominated health care professional of your choice if we haven’t already sent one to that individual.
For donations of $250 you will have full official sponsor status. You will receive a framed “Official Sponsor” certificate. We will include a colour image of your logo, description of your business and a link to your website on our website for 12 months*. We will give you regular shout outs on our Instagram, Twitter, Facebook pages, as well as a pin on our Pinterest . We will also include you in our quarterly newsletter.
Click here for more information about our official sponsors and annual supporter subscription.
Every supporter, regardless of the size of the donation adds their voice to our campaign for better awareness and understanding of Idiopathic Hypersomnia. Your donation will strengthen our demand for more research into the causes and treatment of Idiopathic Hypersomnia as well as better care for all those affected.Who is Hypersomnolence Australia?
*You will get 12 months on our new website but we will also include your logo and link on our current website (since it was established in 2013 it has had over 180000 site visits) until our new website is up and running. Shout outs on our social media will also start immediately and continue until the end of the 12 months with our new website. This means we would be actively promoting your business for at least 16 months from the time you become an official sponsor. So for as little as $15 a month you will have the opportunity to directly market your business and at the same time support a tax deductable charity.
Hypersomnolence Australia started out as a collaborative effort by a group of IH sufferers and friends however the need for a proper organisation responsible of the advocacy and support of Idiopathic Hypersomnia became apparent early on. We realised so much was lacking in Australia in terms of education, treatments, and services for our disorder that we decided to start the very first not for profit organisation specifically responsible for Idiopathic Hypersomnia. Hypersomnolence Australia has come a long way in that time. We now work with a range of professionals to make sure our information is both helpful and informative. We receive advice and support from various medical and mental health professionals in and outside of Australia and work with other sleep organisations to share valuable information and provide a link to our broader Idiopathic Hypersomnia community.
Life’s too short as it is so for people with Idiopathic Hypersomnia it’s important to make the most of every moment that they are awake but this can be difficult when you are struggling to wake up or are fighting to stay awake. Please help us to continue to do the work required to assist suffers live the best life possible.