Huntington's Disease: Horrible illness that needs to stop YESTERDAY

uniQure’s AMT-130 for Treatment of #HuntingtonsDisease Advances in Phase I/II Clinical Trial

uniQure announced that they will move forward with the Phase I/II Clinical Trial of AMT-130, a gene therapy candidate for treatment of HD administered in a single dose to deep brain tissues with MRI-guided neurosurgical delivery. After careful review of safety data for the first enrolled cohort of ten patients, the independent Data Safety Monitoring Board has recommended continued dosing in the study. uniQure will now begin to recruit patients for a higher-dose cohort of the study to continue evaluating the safety, tolerability, and efficacy of AMT-130.

Full Release: https://tools.eurolandir.com/tools/.../?ID=3917643&lang=en-GB&companycode=nl-qure&v

#LetsTalkAboutHD #HDSAFamily #uniQure
 
I have AC on full blast
Not gone outside at all today drank lots of water my body still very hot I only have PJ's on
I hate this symptoms of Huntington D so much
 
Huntington disease patient not me talk about it gets worse in kids in their experiences:
""You either have it or you don't, there's no changes. I would say she has hd, if she had a parent with it and is exhibiting symptoms like rocking and other physical symptoms and she was previously told she was hd positive.
No two with hd are alike. Even two people in the same family with the same cag repeat can have totally different symptoms and experiences.
The grey area is where they have a lower cag than what is generally recognised as hd positive... 40 cag repeats is the base line.
Less than that they can pass it onto their children without having the symptoms themselves due to a phenomenon called anticipation. The gene generally expands with each generation, so if someone has a cag of 38 or 39 and doesn't have any symptoms, their children can inherit a cag in the hd positive range, above 40.
The cag can also retract, but that is less common.""
 
Huntington D Facebook talking about rare disease: "This is the first time I've read an article that has placed HD as a common genetic disorder vs. a rare disease. Mostly in part for late diagnosis, incorrect diagnosis or not properly adding it to death certificates.
This was just interesting....common..the word struck me as insulting....confusing and just aggrivating.
If we were a common disease....why isn't there more awareness..why isn't there more research and outcomes available for the doctors to study?
Although it's just one article it's things like this that remind me that we need to make the world aware of us and HD""
www.sonashomehealth.com

The 7 Most Common Genetic Disorders - Care Options for Kids

Genetic disorders are the result of genetic abnormalities. While uncommon, some genetic disorders occur more than others. Learn more.
www.sonashomehealth.com www.sonashomehealth.com
 
My new aid who catering PT
Chef is cooking me steak????????
 

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I very lucky for her Nakisha cares about her clients she
Joined Huntington D Facebook page and posted good question s on first day in apartment
 
The aid Nakisha need more hours then aunt b thought I need so have to find someone else
She was perfect fit?
 
I’m sorry to hear that, bro. We’ve been through that with my dad who has Parkinson’s. Finding people that mesh can be difficult.
 
Brownski said:
I’m sorry to hear that, bro. We’ve been through that with my dad who has Parkinson’s. Finding people that mesh can be difficult.
Click to expand...
She was excellent
My 2 mom who in charge of my financial stuff though 16 hours a week was enough she needs more hours which I agree with the aid about hours here not with my aunt

Huntington Facebook
"
Recorded sessions from the Virtual 36th Annual #HDSAConvention are now available!

Visit https://hdsa.org/about-hdsa/annual-convention/ to watch today!

#LetsTalkAboutHD #HDSAFamily #HuntingtonsDisease"
 
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