Sue Wright (sue_twin2/suetwin2)

I own The Huntington's Disease Support Club and devote my life to providing online support, creating awareness and raising funds for this devastating disease that claimed my husband's life. I am currently a member of the project team at 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 about The Huntington's Disease Project on Help 4 HD at Blog Talk Radio. A trailer for the documentary was released to the public on 28th June 2011. I'm also an identical twin and we were honoured to feature in the BBC documentary "The Secret Life of Twins" initially aired in the UK in the autumn of 2009, and were interviewed live on BBC Breakfast and had our story featured in The Mail on Sunday, as well as other national and local media including a live interview on BBC Radio Kent. We're volunteers at TwinsUK and have contributed to their research for well over a decade!

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On Monday 12th December 2011, Ana de Lara will be the guest on The HD View.

Ana is the Director/Writer of "Near Silence" - a moving story about what it means to love and the difficult choices it can force you to make.

Roger is a former concert pianist debilitated by the later stages of Huntington’s disease. His loving and devastated wife, Fay, is struggling to find meaning in their existence.

Inspired by Huntington’s chorea symptoms (irregular movements that mimic dancing) director Ana de Lara incorporates poetry of motion in this dramatic short film.

The programme will not shy away from discussing the difficult issues surrounding euthanasia/assisted suicide/assisted dying.

Please feel free to join the discussion and listen to either the live broadcast or the recorded podcast.

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Introducing the We Have A Face "HD Alert!" page Please share!

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Study shows new evidence of age-related decline in the brain's master circadian clock

Research by UCLA's Gene Block, Christopher Colwell provides new insights into sleep difficulties among older people

By Stuart Wolpert July 18, 2011

  Gene Block with co-authors Tamara Cutler and Takashi Kudo  

"One of the main clinical complaints of patients with Huntington's disease and Parkinson's disease is they cannot sleep and do not respond well to sleeping pills. We think the same dysfunction we see with normal aging occurs much earlier and more severely with these patients, and we hope that the treatment strategies we develop for aging can be applied to help patients with neurodegenerative diseases as well. If we learn what is going wrong, then we may be able to develop treatments."

Read the full article at:

Study shows new evidence of age-related decline in the brain's master circadian clock

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Cut-and-paste DNA: fixing mutations with 'genome editing'

Scientists make precise changes to the DNA of a live animal. Could it work for human genetic diseases?

  By Dr Jeff Carroll on July 18, 2011 Edited by Dr Ed Wild

What if we could edit the DNA of patients to remove the Huntington's disease mutation altogether? Sounds like science fiction, but new research in an animal model of hemophilia suggests that it can work - and now HD researchers are on the case. Read the article at: 

Cut-and-paste DNA: fixing mutations with 'genome editing'

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HELP 4 HD with Dr. Merit Cudkowicz 2CARE Series Part I

HELP 4 HD wrote: Monday, July 18, 2011 – Our incredible special guest is Dr. Merit Cudkowicz who is the Julieanne Dorn Professor of Neurology at Harvard Medical School. Dr. Cudkowicz's research and clinical activities are dedicated to the study and treatment of patients with Huntington's Disease and amyotrophic lateral sclerosis. Dr. Cudkowicz directs the Massachusetts General Hospital Neurology Clinical Trials Unit and is the Principal investigator of the Phase 3, 2 CARE clinical trial of Coenzyme Q10 in people with HD. She is an active member of the Huntington Study Group (HSG) and has pioneered clinical trials of new therapies for people with HD and other neurodegenerative disorders. In conjunction with the HSG consortium, she is a pioneer in promoting and developing more efficient methods of testing new therapies in people with HD. HELP 4 HD with Dr. Merit Cudkowicz 2CARE Series Part I

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Visit Original Link

A Cinch explaining my absence and return! 

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The Huntington's Disease Project - Documentary Trailer

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Happy 4th July from James Valvano and the rest of the film team!

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It is time for revenge message board awareness image I created on 6th February 2011

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I am currently a member of the project team at 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. 

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Between each dawn and setting sun, set aside some time for fun.

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At two gigs by The Runaways today so unable to do much advocating for Huntington's Disease (HD) but will enjoy the music!

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The Huntington's Disease Support Club is for everyone connected to Huntington's Disease:- those affected, tested positive, at-risk, tested negative, caregivers, family members, and friends. Our goal as a club is to offer support through unity, and to work together to raise awareness and funds. We have a Club Chat on:- Mondays at 8-10 pm UK time (3-5 pm Eastern)  Wednesdays at 6-8 pm UK time (1-3 pm Eastern)  Fridays at 10pm - midnight UK time (5-7 pm Eastern) at: Huntington's Disease Support Club Chat Room Please be considerate of others in the room as people attend the chats who are already symptomatic and cannot type (or read) fast, and more people for whom English is a second language are joining so they also need additional time. The chat room is not compatible with all web browsers so visit bravenet.com to try and ascertain whether or not the browser you are using is causing the difficulty. Also please note that java needs to be enabled in order to use the room. Please be aware that long messages get you booted as does closing the entry window. Everyone is welcome! You are not alone! Sue (aka sue_twin2 or suetwin2) and Kelly (aka ksh26052002), Club Moderators

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"Life is like a grinding stone: it can polish you or pulverize you, depending on how you position yourself"

Larry De Angelo

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The Huntington's Disease Support Club's logo

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Huntington's Disease by Sue Wright (by suetwin2)

An introduction to the basics of Huntington's Disease designed to create awareness and secure support for research and families living with HD.