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.

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!

Support the Huntington's Disease Film Project

Please support the Huntington's Disease film Project and help make more people aware of it by wearing our badge!




Thank you!

My Huntington's Disease Channel on Vimeo

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

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'

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

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.

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.