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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 04-11-17, 12:53 PM   #1
Fola
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Default Good news??

Some encouraging news to read:

http://www.newshd.net/articles/10845...-within-reach/
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Old 08-11-17, 08:35 PM   #2
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Default Re: Good news??

Quote:
Originally Posted by Fola View Post
I wish was available now.
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Old 09-11-17, 06:22 PM   #3
Allan
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Default Re: Good news??

.
Hi there

If you want to hear all the details from the clinical experts related to the Gene Lowering\Silencing Trials, have a listen to these 3 talks:

Prof Sarah Tabrizi announces ASO huntingtin lowering trial for Huntington's disease

Ed Wild - update on the Ionis 443139-CS1 trial of HTTRx for Huntington's disease - June 2016

Huntington's disease research update 2016- The best time to plant a tree -Jeff Carroll & Ed Wild

If you want further information there are a number of primary websites. Your weblink was from a report on a talk that Ed did at the SHA conference a short time ago. It didn’t really describe what’s actually happening. Many of these media sources, including the BBC, are just looking for a good headline. Try these for a reality check:

Huntington’s Disease antisense oligonucleotide huntingtin lowering (‘gene silencing’) trial: IONIS-HTT-Rx

UCL HUNTINGTON’S DISEASE RESEARCH

Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of IONIS-HTTRx in Patients With Early Manifest Huntington's Disease

Enrollment in Phase 1/2a Study of IONIS-HTTRx in Patients with Huntington’s Disease Completed and Open-Label Extension Study to Open in 2H 2017


HDA Message Board > Message Board Categories > Research, drugs, treatment, new diagnosis: Ionis HTTRx Trial

Update confirms Huntington's disease 'gene silencing' trial on track

SHARE 2017

http://hdresearch.ucl.ac.uk/2015/10/first-patients-treated-with-gene-silencing-drug-isis-httrx-for-huntingtons-disease-2


https://huntingtonsdiseasenews.com/2017/06/27/huntingtons-therapy-ionis-httrx-phase-12-trial-completes-patient-enrollment

http://www.newshd.net/articles/10383/enrollment-phase-12a-study-of-ionis-htt-rx-patients-with-huntingtons-disease-completed-and-open-label-extension-study-to-open-2h-2017

There’s always more: www.cam.ac.uk/subjects/huntington%27s-disease

It seems that, if successful, the drug will not be available to everyone pre-symptomatic or with the disease. The drug will be injected into the spine [sort of the opposite of a lumbar puncture - insertion as opposed to withdrawal] and this will take place at a specific hospital on a monthly schedule … if I’ve read it all correctly.

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Old 09-11-17, 06:53 PM   #4
Allan
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Default Re: Good news??

.
Hi Rainy and Fola

Huge apologies if that was too much info. I've just read your other messages and I must learn to tread more carefully.

We all find ourselves in different places and in different stages dealing with this disease, whether it be the HD+ carrier or the family Carer.

Therapies for the HD-family member are often hobby and recreationally-based: physical exercise, singing, pets and other animals, gardening, computer gaming and similar stuff fall into this category. The other therapies are pharmaceutical and cover aspects of chorea and areas of anxiety and depression. However, they are not HD-specific and HD-individuals sometimes need to “chop and change” until they find the correct medication and the correct dose - it’s not an easy science.

Best wishes

.
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Old Yesterday, 11:26 PM   #5
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Default Re: Good news??

Loads of info as usual Allan, thank you, I like your new signature, sign off.…oh and the 🐸 frog.

Last edited by Cupcake; Yesterday at 11:27 PM. Reason: Missed a comment
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