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

[Warp daddy]

Scotty Ya mean : Get Lucky day

 

[Harvey]

An upcoming event. I probably won't make it up for that, but I'm going to reach out to Brittany to see if NYSB can donate:

HDSA Hudson Valley Team Hope Walk Returns October 23

HDSA Hudson Valley Team Hope Walk Returns October 23 @HDSA

news.hamlethub.com

The Northeast Region of the Huntington’s Disease Society of America (HDSA) will host the Hudson Valley Team Hope Walk on Sunday, October 23rd at 10:00 AM at Walkway Over The Hudson. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease (HD) and their families.

“It is inspiring to see the incredible outpouring of support our HD community receives at our Team Hope Walk event,” said Melinda Jensen, HDSA’s Northeast Regional Development Officer. “It is a welcoming space for new HD families to find community, and all walkers leave the day with a renewed sense of motivation, determination, and courage to continue the fight against HD.”

Team Hope is HDSA’s largest national grassroots fundraising event, which takes place in over 100 cities across the U.S. and has raised more than $20 million for HD since its inception in 2007. Thousands of families, friends, co-workers, neighbors, and communities walk together each year to support HDSA’s mission to improve the lives of people affected by HD and their families.

For more information about the event, please contact Brittany Johnson ( brittany.johnson@ocservpro.com, 845-551-4172). Online registration and donation can be found at hdsa.org/thwhudsonvalley

HDSA's Team Hope Walk Program is nationally sponsored by Genentech and Teva Pharmaceuticals. 

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.

 

[Harvey]

It seems that Scotty is participating in a clinical trial for new Huntington's Disease treatment:

"Trials yes, but hard for me because mostly in the city at Columbia University which is far from where I live in Middletown NY. But medicine should be for all of us HD patients very soon from my doctor who specializes in HD work in Middletown."

Best of luck with this my man.

 

[Harvey]

It seems that Scotty is participating in a clinical trial for new Huntington's Disease treatment:

I got this wrong. Scotty isn't in a trial, but I think his doctor is trying some new medicine to try to relieve his stomach issues. I'm not 100% sure his stomach issues are related to Huntington's to tell you the truth. But it sounds like he is going through an extremely difficult time.

It happens all time days when I just drink water, or eating food, Good news I lost lot's of weight down above 30 lbs.

This is why I feel like I don't have lots of time left here in this life. I am the same stomach issues that continue, and every thing else that talks about still bothering me. Hope the new medicine that the doctor gave us came yesterday I started as prescribed on everything.

Huntington disease experts on why it's hard to get new medicine for people, like me. Good article below I recommend reading it when you have few minutes.

"Huntington's disease (HD) is a neurodegenerative genetic disorder prevalent in around 5 to 10 per 100,000 individuals in North America and Western Europe. This disease is caused by the expansion of polyglutamine (polyQ, CAG) repeated in the first exon of the protein huntington (Htt). Although HD was identified approximately 20 years ago, scientists face many challenges in developing effective treatments for the disease."

https://www.news-medical.net/health/What-are-the-Challenges-in-Developing-New-Treatments-for-Huntingtons-Disease.aspx

News finding on how Huntington disease works against my body.

https://phys.org/news/2022-08-insights-huntington-disease.html

I sense that Scotty still wants to be part of the group here (and at AZ) but just can't do it himself.

I'll try very hard not to post any misinformation, sticking to quotes, and not interpreting.

Scotty my apologies to you for not doing a better job at this.

 

[wonderpony]

Hey, Scotty! My local Wegmans sells Sabrett's sauerkraut. I think of you when I buy it. I hope that you are hanging in there.

 

[Harvey]

Happy weekend. Today is my late dad bd.

My dad and me ski together in vacation I think in Vermont on Feb vacation president week from long Island our school was closed the whole week in 1980s late parents now but I believe that are keeping me and my sister cheri love and protect all time from heaven.

 

[Harvey]

Scotty really believes in the work being done by Champions for HD.

If you are in the midwest, you could support their big annual benefit:

Annual Benefit Concert | Championsforhd

www.championsforhd.org

Or you could nominate Scotty for 2022 Champion for HD:

Nominate Champion for HD | Championsforhd

www.championsforhd.org

Or donate:

DONATE | Championsforhd

www.championsforhd.org

#HDCantTameMe
#BreStrong

 

[Harvey]

Scotty says hello to everyone. He wants everyone know he is OK.

HD trials not me in the study but at least positive news
Can you post this
You can please tell everyone I OK

HD trials medicine good news below for the whole HD community.

"BREAKING NEWS"
Genentech/ Roche announce the plans for GENERATION HD2, a new Phase II clinical study expected to start enrolling study participants early next year.

Click here for full statement:

https://hdsa.org/wp-content/uploads/2022/09/Roche-Global-Patient-Community-letter_EHDN-2022.pdf

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily

 

[Harvey]

"Happy humping day!"

"Wish me luck tomorrow going to the dentist cleaning they will freak out when they see my hair
I know this is definitely causing me the issues."

---

""It's happening! Wave Life Sciences has officially released a press release with initial results from their new Phase 1b/2a study of WVE-003.... and the results are POSITIVE!

WVE-003 is Wave's third attempt at getting an ASO to knock down the mutant Huntington protein. Like Roche, it's an ASO. The big difference is Wave is targeting ONLY the mutant protein. In additional big news, Wave has developed a way to track the levels of mutant protein and wild type protein! That's a big step!

Here is a quote from the press release:

“Based on these initial data, it appears that our preclinical data for WVE-003 are translating in the clinic,” said Michael Panzara, MD, MPH, Chief Medical Officer and Head of Therapeutics Discovery and Development at Wave Life Sciences. “We are encouraged to see a mean CSF mHTT reduction from baseline of 22% at day 85 after participants received just a single dose of WVE-003, demonstrating a compelling pharmacological profile for individuals with HD. We are grateful to the HD community, including the SELECT-HD participants, study sites and advisors, for their continued partnership and support of this program. We look forward to continuing to expand this study and sharing additional data next year.”

You can read the full press release here: """

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial with Initial Results Indicating Allele-Selective Target Engagement with WVE-003 in Huntington’s Disease

Single doses of WVE-003 appear generally safe and well-tolerated CSF mutant huntingtin (mHTT) protein was reduced following single doses of 30 or 60...

www.globenewswire.com

 

[Harvey]

Happy Thursday the next pm is what is happening to me health wise as best as I can describe.

"Murtle my new very good aid, there any dentist that are in Middletown that are good I still not get better take all medicines and my appointment the other day new people who didn't due any x ray dentist assistant who was new, and did my cleaning I know that, hair is in my teeth and mouth and throat if they take my insurance or not just need 2 opinion . It's very hard for me to drink water and eat now because of this situation. ???"