Wednesday 23 January 2013

UK e-petition for Huntington's Disease

My friend Trish Dainton has created an e-petition:


e-petition


Huntington’s disease - Recognised and considered appropriately for benefits.

Responsible department: Department for Work and Pensions
With the call by Cheryl Gillan for claimants with Autism to be treated differently under the work capability assessment tests, we call for those claiming for Huntington’s disease (HD) to also be granted special treatment ‘so that it is fair and appropriate for claimants’.
HD is an inherited brain disease for which there is no cure. Classed as ‘rare’, the lack of informed medical knowledge about HD can lead to misunderstanding of its likely progression. Those diagnosed currently have a life expectancy of below 20 years from symptom onset.
The government previously singled out HD in the case of insurance. Having already decided positive testing means a life is of limited timescale, we urge the government to recognise the need to streamline the benefits process for those suffering and their carers.

To sign it, please go to:

http://epetitions.direct.gov.uk/petitions/44660

Please encourage your family, friends and acquaintances to also sign and share - many thanks!


Friday 9 December 2011

The HD View with Ana De Lara


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.

Saturday 1 October 2011

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



Please be aware of the "HD Alert!" page which was established today and is currently trying to help in the search for a person suffering Huntington's Disease who has been missing for over a month now. Please help in any way you are able - thank you!

Monday 25 July 2011

Tuesday 19 July 2011

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

UCLA Chancellor Gene Block with co-authors Tamara Cutler and Takashi Kudo
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

Monday 18 July 2011

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


Genome editing uses special molecular scissors to cut DNA in cells at exact places. Then new DNA is spliced in at the cut site.


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'

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

Sunday 17 July 2011

HD Logos Patchwork Poster


An awareness image I created using some of the Huntington's Disease logos I've created or found over the years I've been providing online support.

Saturday 16 July 2011

Huntington's Disease Videos

The video I made as an introduction to the basics of Huntington's Disease designed to create awareness and secure support for research and families living with HD.



The trailer for the We Have A Face organisation's documentary film "The Faces of Huntington's Disease: I Am No Longer a Faceless Face" in which I feature togther with James Valvano and Clarice Miller.

The Huntington's Disease Project - Documentary Trailer from James Valvano on Vimeo.