IDIOPATHIC HYPERSOMNIA AWARENESS WEEK® 2017

There are many misperceptions about idiopathic hypersomnia. This combined with inappropriate testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed of all neurological sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for these same reasons is immeasurable. Further research is desperately needed in all areas, ie: etiology, epidemiology, the genetic aspects of the disease and to identify biomarkers that will lead to better more appropriate diagnostic tools. The theme of Idiopathic Hypersomnia Awareness Week ® 2017 is “Research”

#ResearchChangesLives    #IHAW2017

More information will be added to this page as we progress through the planning stages of the awareness week so make sure you check back here from time to time.  

If there are any individuals or organisations that would like to get involved or share their activity or event ideas please contact us at ihaweek@gmail.com


If you are an individual, group or organisation and would like to hold an appropriate awareness activity or event you can register your activity by completing this form

If you are an individual looking for information about being an Ambassador click here.
Please note we have confirmed our ambassadors for 2017 however you would like to register you interest for next next you can complete the form and we will be in touch early next year. 

And dont forget to follow the IHAW on Facebook, Twitter @IHAWeek and Instagram

For more information in general about the Awareness Week check out our Events/Awareness Week Page

Meet the Idiopathic Hypersomnia Awareness Week® 2017 Ambassadors

We are pleased to introduce the 2017 Idiopathic Hypersomnia Awareness Week® (IHAW) ambassadors. They are diverse group from different parts of the world bringing together a range of perspectives and personal experience with Idiopathic Hypersomnia and sleep health.

  • Jenna James

    lives on the beautiful Central Coast of NSW Australia. She works in the medical devices manufacturing industry. She is a production planner and also organises home haemodialysis patient deliveries. She enjoys being part of the process that improves the quality of life for patients and finds her work communicating with nurses and patients rewarding. She loves animals, especially cats! punk music, travelling, poker, video games, and makeup. Jenna is a keen Idiopathic Hypersomnia Awareness Week ambassador, she is looking forward to raising awareness within her community and the broader public.

  • Soda Kuczkowski

    is the owner of START WITH SLEEP, a holistic, integrative education resource center and retail boutique that addresses both behavioral and medical sleep challenges in Buffalo, New York. She is also the founder of the Start Your Journey Sleep Program ™. She is committed to raising awareness of sleep disorders and addressing sleep concerns and questions by providing sleep health education from maternity and child to adult sleep. Soda says her mission “is to provide guidance for preventative measures in health management and to improve quality of life with nature's most powerful tool for balanced health of body, mind & spirit- SLEEP!”

  • Madeleine Tink

    lives in the central west of NSW. She graduated from university in 2015 with a degree in social work and now works as a caseworker with a foster care agency. She has returned to university to study psychology with the long term goal of researching Idiopathic Hypersomnia in the hope of helping those who live with the disorder. She is very passionate about the need for more research into Idiopathic Hypersomnia “as it's very neglected in terms of research when you compare it to narcolepsy”. Maddy is also a young mum to a daughter who is the light of her life.

  • Margaret Robertson

    lives in the beautiful North Pole...yes its real! She is a mom and photographer. Margaret loves being a mom, meeting other families, the outdoors and capturing special moments with her camera. She also enjoys reading but finds living with Idiopathic Hypersomnia limits her ability to read as much as she would like. Margaret’s hope is to raise awareness of the need to have medications approved specifically for Idiopathic Hypersomnia and to bring awareness to the struggle of people who, like her are affected by America's health care inequality.

  • Michelle Atkinson

    lives in Auckland, New Zealand. She works in healthcare evaluation and is also an elected member of Auckland District Health Board. While living with hypersomnia she enjoys theatre, languages, and social enterprise, among other things. Michelle believes understanding lived experience is necessary for health system improvement, and that role modelling openness and humanness helps us move towards becoming a supportive and understanding society.

  • Claire Wye

    lives in a pretty town in the county of Kent in the UK. She is a Human Resources Business Partner working for a charity in England. Due to work commitments and living with Idiopathic Hypersomnia she doesn’t have much time for anything else but when she can Claire enjoys yoga, and spending time with her lovely friends and walking her “handsome hound”. Claire’s personal experiences and connection to others with disabilities has provided her with valuable insights to the importance of and positive effect of raising awareness.

  • Allison Lewis

    is a wife, mother and grandmother from Huntsville, Alabama USA. She enjoys photography, hikes in the woods, volunteering, live music and travel. She has lived with Idiopathic Hypersomnia for nearly 30 years however like many people it took several years for her to be diagnosed. Allison hopes her role as an Idiopathic Hypersomnia Awareness Week ambassador will help raise awareness that will lead to earlier diagnosis and better treatment options.

  • Zachary Kusiak

    lives in Alabama, USA. He is a USAF Veteran and young single father of 3. He loves spending time with his children. His aim is to draw attention “to exactly how detrimental Idiopathic Hypersomnia is and the effect it has on the people who have it.”

The official 2017 Idiopathic Hypersomnia Awareness Week artwork

This image is for Facebook covers. Click on the image to save it.

We are pleased to share with you the 2017 Idiopathic Hypersomnia Awareness Week® artwork!

We are very proud of our artwork collaborator this year, Helen has Idiopathic Hypersomnia too so despite this project being a challenge it meant a lot to Helen to be a part of it. 

Helen Daly is an Australian artist who has never done anything like this before (graphic design). Helen usually works with graphite, charcoal, watercolours, copic markers, prismacolor pencils and ink so this task opened up a whole new world. We think she did a fantastic job and hope that she is encouraged to do more graphic design! You can check out Helen’s work here: https://www.etsy.com/au/shop/HelenRyanArt 


This image is sized for Facebook covers. Click on the image to save it. 
Click HERE for more IHAW 2017 pics/posters.

For information about the Idiopathic Hypersomnia Awareness Week Trademark and Copyright Guidelines and Terms of Use click here