THANK YOU FOR HELPING MAKE THE IHAW2016 A HUGE SUCCESS!
The 2016 Idiopathic Hypersomnia Awareness Week is now over but what a wonderfully successful Awareness Week we have had!
When I started the event in September
2013 I hoped that it would become a significant awareness initiative for Idiopathic Hypersomnia but I never imagined that in just 3 years the event would be as successful as it was this year.
This year saw the IHAW receive its own social media. This has given me the opportunity to really measure its success. At the time of writing this the IHAW Facebook page has reached over 40,000 people since it was launched in June this year (just 12 weeks!), almost 30,000 of them were reached during the seven days of our awareness week! The Hypersomnolence Australia website has had almost 20,000 unique visitors (individual people, not the same person visiting it over and over) in that same period, since June when I started promoting the Awareness Week. That is nothing short of miraculous considering this website is actually quite primitive (and why we are desperately fund raising for a new one!) These results are huge for a sleep/wake disorder that most people, including doctors have never heard of.
Thank you to everyone that liked, commented on and shared posts and pics. Thank you to those of you that shared your stories. It can be daunting task writing about your experiences but these stories need to be told, I’m glad I was able to help you put your words together. Your stories have done exactly what I knew they would, they have inspired people and they have given them hope. Thank you also to each of you that shared your experiences in videos. Putting a face to your experience is brave and selfless. I appreciate the effort you all made at relatively short notice.
A special thank you to Diana Kimmel and Jennifer Beard from the Hypersomnia Support Group, one of the IHAW partners. They stepped up and jumped on board at a moment’s notice. You two have done an amazing job in such a short space of time with your "This is Hypersomnia" video campaign. It was an excellent and effective way of raising awareness. I’m so looking forward to working with you next year!
Each of the ambassadors raised awareness of the event in their own unique way just as I had hoped. Facebook and social media in general is definitely an important medium for reaching the public so thank you to those of you who diligently liked, commented and shared posts. This is without a doubt one of the easiest but most effective ways of getting Facebook posts seen by large numbers of people so I appreciate your help doing that. I am however also mindful of the big wide world beyond social media so I also appreciate the effort in raising awareness of our event outside of that.
Thank you also to our partners, your support is appreciated by everyone in our community.
I am also extremely grateful to Talinka Hill from Xpress Design for volunteering her time and talent to designing the artwork for the IHAW2016 as well as the IHAW official logo. Talinka is the first designer we have worked with that “got” Idiopathic Hypersomnia which is quite amazing considering she had no prior connection. The artwork was her first attempt and was spot on for our theme of “Improving quality of life”. The logo was a joint effort; we knew we wanted something that incorporated delta waves however other designers couldn’t do anything with them. It was Talinka’s idea to transform them into the sleeping face to represent the people with Idiopathic Hypersomnia which of course is perfect!
One of the other benefits of the IHAW having its own social media is that it helps the success of the awareness week to continue to grow. It provides a central place on Facebook where all of the information can be found so it ensures the stories, articles and images will keep being shared online. It also allows me to keep everyone updated from now until our next awareness week. So if you are on Facebook make sure you like the Idiopathic Hypersomnia Awareness Week page. Preparations usually begin around March. I will be looking for ideas including on what our next theme should be…
My final word is to thank my husband Glenn and my children Jack and Lara. Without their blessing and support the awareness week would definitely not be possible. And of course thank you to Sarah Patterson my Hypersomnolence Australia co-director who helps me in ways she may not even realise. I rarely ever make a decision without discussing it with her first and that’s because I know I can trust her to help me make sense of what honestly can sometimes be complete nonsense. There is a lot expected from Hypersomnolence Australia and the awareness week too considering neither one have a team of busy workers behind them. We do not have any funds at all so I can’t pay for the work to be done or for fancy advertising or promoting. So consider this, the huge success of this year’s awareness week is on the back of the planning and organising being done by just one person and zero funding – imagine how great the Awareness Week would be if it did have funding and a team of busy workers behind it!
I will be posting some information about volunteering and how you can get involved early in the new year, and please consider donating, every little bit helps ensure we can keep the awareness week going and at least at the standard that it is now.
And you can buy Idiopathic Hypersomnia Awareness items at our Zazzle store http://www.zazzle.com.au/hyper_sleep
*Hypersomnolence Australia is a Not for Profit registered Health Promotion Charity
We obviously can't afford a fancy advertising campaign so we appreciate the airtime from Wil Anderson of the Gruen TV Show Thanks for the plug!
WE FEEL BAD ENOUGH ABOUT WHAT WE CAN'T ACHIEVE AND WHAT WE MISS OUT ON
I bet every single person with Idiopathic Hypersomnia can relate to this “But what you don’t know is that I pass on many experiences and opportunities because I am sick. Some things are too difficult, some things are not worth it, and some things could be detrimental to me. What you don’t know is that having a chronic illness is like losing every part of what made you who you are. Sometimes I feel like I’m reaching out for a tiny thread that is tied to life — not life itself (because I’m here, I’m living, I’m on Earth) — but to what living life actually meant to me before I got sick. And I’m trying to grasp that thread that connects me to my old self and to what I love to do and hold it close, because I know what makes me a person — what makes me me — is almost gone. I mean, is a life really a life when it doesn’t have goals, dreams or desires? Or no hobbies or social outings? No ways to express itself? No means to take care of itself? No ability to give of itself? Because I am very close to losing every single one of those things.” read more...
Meet the Idiopathic Hypersomnia Awareness Week 2016 Ambassadors
We are pleased to introduce the Idiopathic Hypersomnia Awareness Week (IHAW) 2016 Ambassadors. They are a diverse group from different parts of the world bringing together a range of perspectives via their personal experience with Idiopathic Hypersomnia.
The theme this year is “Improving quality of life”, this follows on from Hypersomnolence Australia’s campaign “Help us change the prognosis”.
Idiopathic Hypersomnia is often misunderstood and with the current treatment methods being inappropriate and often ineffective the prognosis is clearly not good. We believe the key to improving quality of life is by taking a holistic or “whole” approach to treatment. Patients can very easily neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally, psychologically, as well as physically.
The goal of the 2016 Idiopathic Hypersomnia Awareness Week is to raise awareness of the need to acknowledge the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage. We want to emphasise the importance of the support and understanding of family, friends and health professionals in the overall wellbeing of those with Idiopathic Hypersomnia and we want people to understand that patients need help and practical support to manage their day to day lives.
We will be sharing stories by people who have benefited by making positive changes to their life to inspire others, as well as advice on how to make lifestyle adjustments
and other lifestyle tips to help make the most of living with Idiopathic Hypersomnia.
If you would like to share your story* or tips on how you manage your symptoms we would love to hear from you. You can email us at firstname.lastname@example.org
*you can remain anonymous if you wish
What is a holistic approach?
It means taking into consideration all the parts that make up a person’s life eg: physical, emotional, mental and spiritual. It’s the concept that the human being is multi-dimensional so for you to perform at your best all areas of your life need to be in good shape. It is very easy for someone with Idiopathic Hypersomnia to neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally and psychologically, as well as physically.
The Idiopathic Hypersomnia Awareness Week has grown from its first event in 2013 so we believe it deserves its own social media! Idiopathic Hypersomnia Awareness Week now has its own Facebook page and Twitter @IHAWeek
This year we will be using the hashtag #IHAW2016
Click here for pics and posters to share and Facebook profile pics and cover photos you can
use. More to come in the next couple of weeks.
Help others learn about Idiopathic Hypersomnia, share our Fact Sheet.
Read about the history of Idiopathic Hypersomnia Awareness Week here
We encourage public and private sector organisations to partner with us to promote awareness of Idiopathic Hypersomnia during IHAW. Interested? read more about it here
Community/Public Service Announcements
- Like the Idiopathic Hypersomnia Awareness Week Facebook page. Like and share our posts.
- Follow Idiopathic Hypersomnia Awareness Week on Twitter. @IHAWeek Like and retweet us.
- Use the hashtag #IHAW2016 when posting on social media.
- Share the Idiopathic Hypersomnia Awareness Week posters.
- Change your profile picture and cover photo. Click here for the IHAW Facebook cover and profile pics. Click here to add a Twibbon to your profile.
- Share the Idiopathic Hypersomnia Fact Sheet electronically or download and print out a copy for your health professionals.
- Make a tax deductible donation. Hypersomnolence Australia, the hosts of Idiopathic Hypersomnia Awareness Week receives no funding and charges no membership. The continuity of the Awareness Week relies on the support of our donors.
- Share your ideas with us. If you have an idea for raising awareness, fundraising or have a talent you think could help? Send us an email email@example.com
- Share your Patient Perspective. 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. Send us an email at firstname.lastname@example.org
Why no sleepy images in the IHAW2016 Artwork?
We have been very fortunate to have Talinka Hill a talented Brisbane graphic artist design the artwork for this year’s IHAW. The theme for this year’s Awareness Week is “Improving quality of life” this follows on from Hypersomnolence Australia’s campaign “Help us change the prognosis”.
The focus of the 2016 Idiopathic Hypersomnia Awareness Week is to raise awareness of the need to acknowledge the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage. We believe the key to improving quality of life is by taking a holistic, or “whole” approach to treatment. Patients can very easily neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally, psychologically, as well as physically.
We want to emphasise the importance of the support and understanding of family, friends and health professionals in the overall wellbeing of those with Idiopathic Hypersomnia and we want people to understand that patients need help and practical support to manage their day to day lives.
Therefore the people in the artwork represent the supportive community that is necessary for improving quality of life. Overall the artwork depicts hope and the brighter future we wish for everyone with Idiopathic Hypersomnia
The 2016 International Idiopathic Hypersomnia Awareness Week Media Release
Click the link below for a copy of the 2016 media release.
How does the IDIOPATHIC HYPERSOMNIA AWARENESS WEEK Logo represent Idiopathic Hypersomnia? That wavy line means more than you might think! Read about it here
You can use this image for your Facebook profile pic. There will be alternatives coming soon.
The Australasian Sleep Association is the peak scientific body in Australia & New Zealand representing clinicians, scientists and researchers in the broad area of Sleep. The mission of the Australasian Sleep Association is to lead and promote sleep health and sleep science in Australia and New Zealand and to facilitate the professional development of its members by providing education and training, fostering research and establishing clinical standards within the field.
The Sleep Health Foundation is Australia’s leading advocate for healthy sleep. It aims to improve people’s lives by promoting sleep, raising awareness of sleep disorders and building partnerships with organisations.
Hypersomnia Support is a US based support group designed for people with Hypersomnia and those who love them. Their website offers a place to discover Hypersomnia support group meetings, get togethers, and events in the US and is designed to educate, raise awareness, support, and offer ways to get involved.
The primary mission of the American Sleep Association is to improve public health by increasing awareness about the importance of sleep and the dangers of sleep disorders. A secondary mission is to support other efforts and organizations that share our primary objective or help to improve public sleep health in other beneficial ways.
The European Narcolepsy Platform stimulates collaboration between the different national patients associations of narcolepsy patients, connects narcolepsy patients from around the world and represents the interests of narcolepsy patients in Europe.
There are a number of countries in Europe that know very little if anything about Idiopathic Hypersomnia so it is not uncommon for people with idiopathic Hypersomna to be (mis)diagnosed with narcolepsy. With this in mind and considering there are no patient organisations in Europe for people with Idiopathic Hypersomnia the European Narcolepsy Platform is also open to patients with Idiopathic Hypersomnia.