The Imagining Futures project has a dedicated expert review panel made up of people living with different types of SMA and with different relationships with the condition. The panel meets approximately twice a year to bring their expertise and advise on the Imagining Futures project from the perspective of families living with SMA.
The first meeting of the panel took place on October 30 2013 in central London and is due to meet again in the Spring 2014 in Birmingham. You can find a summary of the first expert review panel meeting in the Imagining Futures blog. For more information about what the expert review panel does, or to request to join the panel, please go to the Get Involved with Imagining Futures page.
Below you will find information about who is currently sitting on the Imagining Futures Expert Review Panel and their relationship to SMA.
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Steven was diagnosed with SMA Type 3 when he was five years old and is keen to bring his ideas and personal experience of SMA to the panel. Steven has recently taken a year out of Oxford Brookes University, where he studies Business Management and Film Studies, to complete a placement year with Hays: Talent Solutions. Steven’s past times include; driving, travel, socialising and film and television.
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Georgia is 32 and is from Leamington Spa. Georgia was diagnosed with SMA Type II when she was about 2 and a half years old. She is interested in psychology and doing all sorts of crafts. Georgia also sings regularly in a choir and loves going to see live music.
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Rute is a senior graphic designer in the Life Sciences industry. In 2009, Rute's baby was born with SMA Type I. She sadly passed away at 21 months. Both Rute and her husband are heavily involved in raising awareness of SMA.
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Magda is the grandmother of an eleven year old girl with SMA Type III. She retired in 2010 after many years of working for the NHS. Magda is interested in strengthening the links between families living with SMA, researchers and medical practitioners. Over the last three years, she has been involved with the Jennifer Trust as a grandparent member of the Board of Trustees.
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Sheonad brings both personal and professional expertise to the Expert Review Panel. She is a mummy to two girls, the youngest of whom, Eilidh, has Spinal Muscular Atrophy (SMA) Type II and has been a wheelchair user since the age of 18 months. Together with her experience as a doctor by profession (specialising in palliative medicine and general practice) she is acutely aware of the impact that neuromuscular conditions have on those affected and their families. Sheonad is also Chair of the Scottish Council and a Trustee for the Muscular Dystrophy Campaign.
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Karen has Distal Spinal Muscular Atrophy that was diagnosed when she was 8/9 years old. Karen has three children, one of which also has Distal Spinal Muscular Atrophy. She works full time at a local firm of solicitors and is a licensed conveyancer.
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Kevin is Karen’s partner. Karen has Distal Spinal Muscular Atrophy. Karen and Kelvin have been together for 12 years, although they have known each other for longer. Kelvin works full time and says that whilst living with someone with Distal Spinal Muscular Atrophy has its challenges, it has not stopped them from doing anything!
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Jane first heard about the Imagining Futures Project via the Jennifer Trust for SMA which she has been involved with through fundraising, and more recently as a peer support volunteer, following the death of her son, Leo, from Type I SMA at 5 months old in 2009. Jane already had another son (born in 2006) and went on to have a daughter (born in 2011), who was confirmed as a carrier of SMA following testing during pregnancy. Following Leo’s diagnosis, Jane also discovered that her Dad’s sister had died from SMA Type II at 12 years old in 1969, so knowing that many of her relatives on her Dad’s side could be carriers of SMA continues to have ramifications for her family.
As well as drawing on her personal experience with SMA, Jane also brings research expertise to the expert review panel as a result of her working life as a health researcher at the University of Exeter Medical School.
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