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General HD topics Open forum for all other issues concerning Huntington’s disease

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Old 06-11-17, 12:11 PM   #1
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Allan's Avatar
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Poor Quality Videos [and content] at HD Conferences

Many of the people I met there now resent and distrust scientists. They had hoped for treatments, and had expected help with palliative medication and improved living conditions. At the very least, they wanted feedback on how their contribution had helped.”

I find it difficult to watch and listen to the poor quality videos of speakers at HD Conferences that try to put across what is more easily understood via online text and pictures.

I’ve just sat through Charles Sabine’s 40 minute presentation of “HD in Venezuela and the Pope’s HDdennomore” gathering in May”. He was delivering it at the HD Study Group conference in Denver a few days ago. He was really labouring over his presentation, which also included aspects of: Factor-H; Ignacio Muñoz-Sanjuan; Lake Maracaibo, Venezuela; HD-Venezuelan families.

These weblinks are all in non-scientific jargon and are easy read pieces of much of the video content:


Support communities involved in disease studies

Hope, humanity, and Huntington’s disease in Latin America

Huntington’s disease: the new gene therapy that sufferers cannot afford

The CHDI Foundation is a US non-profit research organisation that aims to find ways to prevent or slow down the progression of Huntington’s disease. The foundation spent £97m-£104m on research in 2015. I assume that includes the salaries of several HD “activists” including Charles.

Research, and especially basic research, is fundamentally disconnected from the realities of vulnerable populations. Is it unreasonable to expect investigators and their institutions to assume some responsibility for ensuring adequate care for volunteers and their quality of life? Perhaps studies in vulnerable populations should not be conducted at all, unless a comprehensive, long-term plan is drafted in cooperation with the research institutions involved and local and national governments.”

See, all that any group of hd-communities is seeking is “adequate care” and for “institutions” to assume some responsibility.

You can find the video on Facebook among the HD Support Group posts

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