Updated: Jul 24, 2019
We are pleased to introduce the 2018 Idiopathic Hypersomnia Awareness Week® Ambassadors. We are fortunate to again have representatives from a few different countries. They bring to the role a range of perspectives and experience. Let's meet them!
Susanna Barber Northumberland, UK
Susanna has a love of people and animals. She has spent many years working with horses in roles that include grooming, a jockey, event rider as well as a yard manager. Sadly, due to IH she has had to give this up. Susanna feels that there is a void in the UK for support and knowledge about IH and she would like to work towards changing that. She is very passionate about changing people’s perspective of those who have sleep conditions as it’s often not thought of as a serious problem. Susanna would love to become a point of contact for people in the UK to offer support and help them find the answers they are looking for.
Claire Staresinic Pennsylvania USA
Claire is a rising sophomore at the University of North Carolina, but is originally from Pittsburgh, Pennsylvania. She is following a pre-med track with a double major in psychology and German literature and culture. Her ultimate goal is to become a child/adolescent psychiatrist. Claire was recently diagnosed with Idiopathic Hypersomnia (IH) during her first year of college. She has experienced the challenges being a student with IH presents and would like to work towards making life better for those in the same situation. She feels very strongly that there needs to be more respect for IH and that people living with IH should receive the same consideration and accommodations that other medical conditions receive. Claire has said that “living with IH presents many challenges to maintaining an active, vibrant lifestyle, but I am determined to continue playing the oboe, serving in student government, volunteering in a research lab, and spending time with friends. I also love reading, drawing, going out for sushi, and meeting new people”.
Laura is a wife, busy mom of three and a nurse practitioner at a sleep clinic in Mississippi, USA. She also suffers from IH. Laura loves gardening, crafts, painting and spending time with family. While her life is often limited by sleepiness Laura is eager to promote IH awareness because she is continually frustrated by the lack of information about IH and the limited treatment options. She hopes that raising awareness will lead to a cause and effective treatment.
Quinn Eastman Georgia USA
Quinn lives in Decatur, GA with his wife and two daughters. He spent a decade working in biochemistry and immunology labs before becoming a writer. Currently his main job is writing press releases and magazine articles for Emory University. Quinn doesn’t have IH however he has a keen interest in disorders of hypersomnolence, particularly IH. He is currently researching for a book he is writing on the subject.
Jessica Ludwig Adelaide Australia
Jess graduated from UniSA in 2016 with a bachelor in communication and media. However after spending 3 months working in the USA she discovered her passion really lay in healthcare. Jess now studies health sciences, and clinical exercise physiology. She works as a Health and Wellness Coordinator in a residential living facility; and loves spending each day helping others. Jess was diagnosed with IH during Idiopathic Hypersomnia Awareness Week 2017. She is looking forward to increasing awareness about IH which one day will hopefully lead to better methods of treatment.
Amanda Vernon Queensland Australia
Amanda is a single mum of 2 teens. Her health issues make it difficult for her to work, drive and do the things she would like, but her kids are her world and she uses most of her energy taking care of them. They share a love of music, theatre, travel and photography. Amanda’s wish is to one day be able to wake up to her alarm clock feeling refreshed. She would like to help raise more awareness of Idiopathic Hypersomnia and to advocate to reduce the stigma and lack of understanding surrounding it.
Deanne Holmes NSW Australia
Deanne lives with her 4 rabbits in a small town in the Hunter Region of NSW. She enjoys movies, she is a big animal lover and she loves spending time outdoors in the park with her nephew and camping when she can. Being a sufferer of Idiopathic Hypersomnia Deanne understands how frustrating and lonely it can sometimes be. She sees the Idiopathic Hypersomnia Awareness Week as a great opportunity to educate and connect with others so that they feel more supported and not so alone along the way. Amanda and Deanne are also two of the admins of the Idiopathic Hypersomnia Australia Facebook support group. Please note: The IHAW Ambassador opportunity is available to everyone. IHAW Ambassadors are not selected, in fact to date everyone that has volunteered and made the commitment to be an IHAW Ambassador has been given the opportunity to be one. We advertise the IHAW Ambassador opportunity on our IHAW website page and we post about it regularly on our social media including in paid targeted ads (paid for by me personally) because I want to give as many different people the opportunity to participate as possible. If you would like to be involved next year or if know someone who might be interested, tell them about it! we look forward to hearing from new people. You can fill in our IHAW Ambassador form and we will be in touch early next year when we start planing for the 2019 IHAW. Michelle Chadwick IHAW Project Coordinator