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

Huntington disease from patients talk about what was cancelled did work for them below
Seems like it was for insurance to save money$???$$::
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Just posted in my Understanding Tominersen group....

Why cant patients simply say they experience improvement with a drug and just be believed? Why does my ability to take life saving medicine rest with a company whose primary purpose is earning money?
Here is the link to join my public group if interested https://www.facebook.com/groups/184016610031057

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Continue conservation from about


Huntington disease
More continued talk about the trails that was working from actual patient below in quotes:
""Corrie Bernard Yes I absolutely do that and have experienced a lot of benefit from some natural solutions. I do think we need to have this type of conversation because if this drug, which reduces 50% of mHtt and attacks the disease at its source, can not get approved that shows there is a serious problem with the entire system by which drugs are approved"""
 
Huntington disease explain below why trails was stopped:
Following up on news that it had halted dosing, Roche has confirmed that its historic GENERATION HD1 clinical trial, aimed at Huntington’s disease’s genetic causes, failed to improve symptoms in study participants. The disappointing trial outcome for the drug candidate tominersen was revealed on April 27 by Dr. Scott Schobel, Roche’s medical leader of GENERATION HD1, at the virtual 16th Annual HD Therapeutics Conference. “Nobody wanted this result,” Dr. Schobel said. “This is a setback, and it’s a setback which is emotional. It’s a setback which we all feel, because, after being able to lower the huntingtin protein for the first time, there’s a lot of hope in that.” Dr. Schobel displayed a series of slides demonstrating tominersen’s lack of effect on trial volunteers. Still, he said the researchers established a “new setpoint for the field”: reducing the level of the mutant protein in the early-stage tominersen clinical trial. However, it now remains for potential future trials to demonstrate that huntingtin lowering can actually help patients. Meanwhile, Dr. Irina Antonijevic, the chief medical officer at Triplet Therapeutics, revealed key details of the firm’s drug program to develop a genetic strategy that contrasts sharply with the idea of lowering the huntingtin protein. Dr. Antonijevic focused on Triplet’s efforts to slow or stop a key driver of HD, somatic expansion, the mutant HD gene’s tendency for continued expansion with age. The firm has selected the specific biochemical target of TTX-3360: the modifier gene MSH3, involved in the maintenance and repair of DNA. Dr. Antonijevic also stated that TTX-3360 will be introduced into the brain using an intracerebroventricular (ICV) injection via a small device implanted at the top of the head. In the Roche trial, participants got spinal taps. Triplet aims to file an application by year’s end for a Phase 1/2a study of TTX-3360
 
Huntington D ( other patient) not me:
"""My name is Huntington disease patient, and I am writing an article for Kaiser Health News about the lack of expanded access (also known as compassionate use) for patients with rare diseases. The purpose of expanded access is to allow a patient with a serious or life-threatening disease who has no other treatment options to receive an investigational drug outside of a clinical trial, and only patients who are ineligible for a trial can receive a drug this way. I am hoping to talk with patients with HD or caregivers who have tried, are trying, or plan to try to access an investigational therapy using expanded access but are having difficulty doing so. This includes anyone tried to access tominersen. if you’re interested or have questions. I have until to talk with anyone interested"
 
Huntington disease medicine and trials more Good explanation:

curehd.blogspot.com

‘The first at-bat is never a grand slam’: how Huntington’s disease drug research has matured with the Roche and Wave setbacks

curehd.blogspot.com curehd.blogspot.com
Despite the disappointing clinical trial results reported last week by Roche and Wave, Huntington’s disease drug researchers see an upside: they are using the data collected to achieve new insights, offering renewed hope of effective treatments. The news of these setbacks produced a heartbreaking moment for the HD community. “That kind of news, I hope it’s okay to say: it sucks!” said CHDI CSO Robert Pacifici, Ph.D., of the Roche and Wave trial data. “All of us who hold out so much hope and recognize that there are so many families who so desperately are waiting for much needed relief and therapies – it knocks the wind out of you.” Dr. Pacifici offered his assessment of the trial data and the state of HD drug research in a wide-ranging interview with me after the close of the 16th Annual HD Therapeutics Conference on April 29. “My reaction though, now that I’ve come back down to earth, is really not one of surprise,” he said. “Drug discovery, as we’ve discussed many times, is a really tough business. The probability of success on any given endeavor is incredibly low.” Dr. Pacifici used a baseball metaphor to explain: “How often does the first batter get up to the plate and hit a grand slam home run? A grand slam, never, because you need to load up the bases with three people. Even a home run is incredibly rare.” The “name of the game” in discovering effective treatments is to carry out as many trials as necessary, “doing it well, failing, but making it a good failure that we can learn from so that subsequent efforts have a much higher chance of success,” Dr. Pacifici explained. “And we continue to snowball and build on that so that we can learn the things to do better, the things that we can do differently, or the things that we should stop doing altogether because we now have confirmed that those are not viable lines of investigation.” Now the process is moving “faster” and is “better informed,” he noted, adding that other key clinical trial programs are in the world
 
Huntington disease over heating Facebook page conservation
Lots of HD people over heating
I surprised Columbia hospital didn't know it immediately when I mentioned it to them
"Hil, many people with HD suffer from Thermoregulatory disfunction so not unusual. You can check it out with your GP or on line."
Happy Monday
 
??????For you Scotty and all who suffer from this dreaded disease , Hang in there man , keep hope alive !
 
Get the word to us government to take Huntington disease illness as tragic as it is here way s to help:
ht.tps://www.wehaveaface.org/so/66NbMbR_D?languageTag=en&cid=79f51f81-7271-4099-b5e3-1400320de907#/main
"
 
From Huntington Facebook page I fully agree it would help but in situation apartment program for sober and mental illness and my family never understand:
"""Treating Huntington's with cannabis. Smoking cannabis will only help you for so long . THC oil For the win.. YouTube Rick Simmons oil. Whose cancer killing treatment will help you a lot . going to feel way better.""
 
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