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.
Clare Phipps is 27 and lives in London, UK. Sleep first began to seriously affect her life in 2009, but it took 3 more years until she was diagnosed with Idiopathic Hypersomnia. Clare is Chair of the Green Party of England and Wales, and is involved in a campaign to increase access to politics for those with disabilities and caring responsibilities by allowing Members of the UK Parliament to job-share. She lives with her partner who has supported her throughout, and is currently trying to secure the social care support to return to her PhD examining gender differences in health and disability. They have two house rabbits who hop on the bed to check she is still alive during long sleeps.
Diana Kimmel is from Atlanta Georgia US. Diana’s passion to help spread awareness grew immediately after she was diagnosed with Idiopathic Hypersomnia in 2011. In 2014 she co-founded the Atlanta Hypesomnia Support Group with Jennifer Beard. The Hypersomnia Support Group meets the first Saturday of each month. Diana also co-organised the 2014 and 2015 Hypersomnia Conferences in Atlanta Georgia. Diana’s focus is promoting education, support and awareness in the hypersomnia community.
Tiffany Towsend is a Medical Scientist from Western Australia. Her Idiopathic Hypersomnia diagnosis came as a big surprise in her mid 30s and left her feeling somewhat isolated and frustrated with the lack of information and support available to those living with this disorder. She is currently exploring lifestyle changes to help better manage her health and is keen to see awareness and understanding of Idioapthic Hypersomnia increased both in Australia and internationally.
Caitlin Spratling is a 22 year old tertiary student from Melbourne, Australia. Caitlin is studying a Double Degree; a Bachelor of Landscape Architecture and Bachelor of Urban and Regional Planning. She hopes to work in Local Government as an Urban Designer. Caitlin was diagnosed with Idiopathic Hypersomnia last year after suffering with the condition for 3 years. Caitlin is keen to raise awareness about Idiopathic Hypersomnia particularly with regards to the challenges patients face.
Nicole Franz is a 27 year old from Washington, US. Nicole has a degree in sign language interpreting as well as secondary education and currently works with the Washington State Department of Social and Health Services (DSHS), Developmental Disabilities Administration (DDA). Nicole has suffered from the symptoms of Idiopathic Hypersomnia since she was a teenager and was diagnosed 5 years ago. Nicole enjoys adventures with her partner Jeffrey and their fur-baby Bayleigh who is her biggest supporter.
Melissa Pittman is a 45 year old mother of two children from Mississippi, US. Melissa developed symptoms of Idiopathic Hypersomnia in her early 20’s however it took almost 15 years before it was diagnosed. Having spent her whole young adult life with an undiagnosed sleep disorder Melissa knows the challenges others in her situation face. Melissa is therefore keen to draw on her experiences to raise awareness of the negative impact this disorder can have on lives.
Idiopathic Hypersomnia Awareness Week Project Manager
Michelle Chadwick is a wife and mother of two from Brisbane, Australia. After helping to establish a Nonprofit organisation to support disadvantaged young women Michelle Chadwick decided to dedicate her time to a cause closer to home. Michelle was diagnosed with Idiopathic Hypersomnia in late 2008 after struggling with the condition for more than 25 years. Unfortunately the diagnosis didn't provide any closure; in fact it only served to leave many questions unanswered. Michelle quickly discovered there was a lack of awareness and quality information available about Idiopathic Hypersomnia. She also found that there were no support services available to patients. When patients were diagnosed there was nowhere to direct family and friends to so that they could better understand the condition and the implications it has on quality of life. While there are many organisations that represent various sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. Michelle was inspired by a group of fellow Idiopathic Hypersomnia patients to change that. At the beginning of 2013 Michelle set up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia (HA) was registered as a Health Promotion Charity in March that year. In September of 2013 Michelle launched the world’s first Awareness initiative. This was a month long event that is now recognised as the annual international Idiopathic Hypersomnia Awareness Week held every year during the first full week in September.