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Idiopathic Hypersomnia Awareness Week Ambassadors® 2019

We are pleased to introduce our 2019 IHAW Ambassadors. Clockwise from top left...

Matthew Baker has a long history in IT and business over the last 30 years, and was well placed with a first degree in Chemistry, and a follow on MBA. Following a series of blood clotting incidents his daytime sleepiness became much more apparent and impacted directly on his work, and own business. Since being diagnosis with Idiopathic Hypersomnia (IH) he is back working providing support for other small businesses and is looking to resume part of his old employment. He has a background in voluntary work and wants to help others suffering from IH, who are not in a position to readily find information. He is looking at different ways to make a difference including providing more information to people in the UK suffering from IH, or living with people in his position. We are pleased that Matthew has decided to stay on after his 2019 ambassador role as a project manager for the IHAW and Coordinator for the UK.

Marina Kojima lives in Tokyo, Japan. Marina is a founder of Hypersomnia and Long Sleeper Support Organisation Japan. The organisation provides support and information to people with hypersomnia and is the only organisation for people with all forms of hypersomnia in Japan. There is not a lot of information available in Japanese regarding Idiopathic Hypersomnia (IH). Marina would like to help translate so that there is quality information available and to help raise awareness. Marina does not work outside of her volunteer work due to her own struggle with excessive daytime sleep and fatigue. She spends time traveling when her health allows. Marina joins us as an ambassador this year but we are also very pleased to have her as our permanent IHAW Coordinator for Japan. This is the link to the Japanese Hypersomnia and Long Sleeper Support Organisation

Kelly Bowen is from Victoria Australia. She lives with her partner, 2 children, 2 dogs, 2 turtles and a few other animals! She enjoys running, scrapbooking and she loves to read. She has been a police officer for almost 17 years and was diagnosed with IH 3 years ago. When Kelly first started medication she had no idea that that’s what normal people felt like every day. She said it was like “putting on a pair of glasses and being able to see clearly”. It was such a relief to Kelly to know she wasn’t just a lazy person. She wants to get people thinking about IH and become aware of how debilitating it is.

Michelle Horning is a Work, Health and Safety Consultant with the South Australian Public Service. She has also been a serving member of the Army Reserves for nearly 29 years. Michelle’s daughter Brianna was diagnosed with Idiopathic Hypersomnia (IH) a year ago when she was 16. Brianna is saddened by the fact that there is no cure and is disappointed that no one understands her struggles and what it means to live with IH. Michelle would like to help change that as much as she can. When Michelle is not working and caring for her family she enjoys camping, 4WDing and anything that means time with her family.

Liz Sheeley is a science writer who has written about her constant struggle with IH and the long diagnosis process. She lives in Boston, MA and loves to work out--anything from spin to barre and yoga, which has also helped create a routine and alleviate some IH symptoms.

Tom Helge is from Jessheim Norway. He was diagnosed with Idiopathic Hypersomnia in 2015. Tom works in a bookstore and enjoys reading, writing, photography and traveling. There is very little awareness or knowledge of IH among both health professionals and the general public in Norway so he is keen to do what he can to change that.

Tom er fra Jessheim Norge. Han ble diagnostisert med idiopatisk hypersomni i 2015. Tom Helge arbeider i Ark bokhandel og liker lesing, skriving, fotografering og reiser. Det er svært lite bevissthet eller kjennskap til IH blant både helsepersonell og allmennheten i Norge så han er opptatt av å gjøre hva han kan for å endre det

Jessica Ludwig is from Adelaide South Australia. She was diagnosed with IH in September 2017. After completing her bachelor in Communications and Marketing she discovered a passion for health and wellbeing. After working as a Fitness Coordinator in rehabilitation for 12 months, she began studies to become a Registered Nurse. Now in her first year of nursing she also works as a Head Medical Sports Trainer for a community AFL (football) club and exercises racehorses, as well as having two horses of her own. Jessica became an ambassador for the IHAW because she is passionate about helping others and wants to be an advocate for other's who feel their options are limited by their illness.

Deborah Gamel is a regulatory compliance analyst for a regional bank in the southeast United States. She is also is currently serving as President for her Toastmaster Club and is an inspiring Artist. Deborah has been married for 32 years and has 2 grown children. Currently her children at home are three very energetic young Border Collies. It was a great relief to Deborah when she was diagnosed. It gave her a reason for why she felt the way she did for so long, a way to manage her condition, and hope for a cure. She would like to raise awareness and to share her experience to help others who are suffering in silence. Are interested in being an IHAW Ambassador? We start planning the IHAW early in the year (usually around late February, early March). It starts with us getting our new team ready so if you would like more information check out our IHAW Ambassador page or if you would like to express interest in becoming an ambassador click here to fill in our form. Please note that our team for 2020 will be confirmed by mid March next year so get your form in as soon as possible so you don't miss out!


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