suetwin2's Blog

The Huntington's Disease Support Club owner's blog! I'm known as sue_twin2, suetwin2 or Sue Wright

Sunday, 3 February 2013

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sue_twin2: West Kingsdown, Kent, United Kingdom; I own The Huntington's Disease Support Club & devote my life to providing online support, creating awareness & raising funds for this devastating disease that killed my husband. I was a Regional Advocate for the We Have A Face organisation working on "The Faces of Huntington's Disease: I am No Longer a Faceless Face" - a documentary exploring the many aspects of the disease. The team were interviewed on 29th May 2011 on Help 4 HD at Blog Talk Radio. Trailers for the documentary were released to the public in June 2011 & April 2012. Due to circumstances beyond my control, I've had to resign but hope that the documentary will be completed before too much more time elapses. I'm also an identical twin & we were honoured to feature in the BBC documentary "The Secret Life of Twins" initially aired in the UK in autumn 2009, and were interviewed live on BBC Breakfast and had our story featured in The Mail on Sunday, as well as other national & local media including a live interview on BBC Radio Kent. We're volunteers at TwinsUK contributing to their research for many years.