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!

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!