# Huntington's Disease hope for cure everyday



## ScottySkis (Jun 18, 2021)

Huntington's Disease Support Group | Facebook
					

Please note that in order to join the group you must answer the required questions.  This is to keep the group limited to those who are affected directly by the disease as well as try to prevent...




					www.facebook.com
				




I had this horrible illness know it's for few years
Overheating is summer time and lots of stuff I can't due any more
I been great memories from few great friends who I ski with
We need to cure all this tragic illness yesterday


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## deadheadskier (Jun 18, 2021)

Man,

Sorry to read this Scotty.  

Hopefully treatments improve and help you


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## dblskifanatic (Jun 18, 2021)

Scotty that is a tough one for sure!  I do hope that they do find a way to treat that.  Hits at a young age!  Sorry!


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## ScottySkis (Jun 18, 2021)

Thanks everyone much appreciated I pray for everyone that ends yesterday I know children so it stops with me I know n for few years now


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## Nick (Jun 18, 2021)

Hey Scotty, hang in there.


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## Not Sure (Jun 18, 2021)




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## JimG. (Jun 19, 2021)

Keep hanging in there buddy.

Not sure how many on this site knew about your illness but kudos to you for opening up about it to everyone.


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## Glenn (Jun 20, 2021)

So sorry to hear the news Scotty.


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## NYDB (Jun 20, 2021)

Damn man.  Sorry to hear that.  Hang in there.


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## snoseek (Jun 20, 2021)

Dont stop fighting and hopefully modern science can give help. Sorry man hoping for the best


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## 180 (Jun 21, 2021)

Sorry to hear, hoping you find a return to your health.


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## thebigo (Jun 25, 2021)

This is terrible. Please let us know if there is a research effort to which we can donate. 

I hope you keep posting.


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## ScottySkis (Jul 2, 2021)

thebigo said:


> This is terrible. Please let us know if there is a research effort to which we can donate.
> 
> I hope you keep posting.


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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## ScottySkis (Jul 3, 2021)

Huntington disease new trails that shows potential for patients:
"""








						Landmark CRISPR trial shows promise against deadly disease
					

Administering gene-editing treatment directly into the body could be a safe and effective way to treat a rare, life-threatening condition.




					www.nature.com
				



'"


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## ScottySkis (Jul 5, 2021)

From Huntington Facebook page another patient that describes his life effect by HD I feel the same: 
"I'm a tough individual! I worked hard and enjoyed my life! But this disease got the best of me! It is not something you can ignore! The longer you ignore it the stronger it becomes! It starts slowly with anxiety and depression! Then the mood swings and anger issues! You slowly shut the world people out and you don't realize it's happening! You're no longer happy about anything! You try to push through but the harder you push the harder you fall down! All you want to do is be normal again and be able to go and do things! But you have little to no energy! You want to shut out the world and crawl into a cave! You start losing your balance you twitch sll the time its very depressing!"""


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## ScottySkis (Jul 10, 2021)

Huntington Disease MRI FINDS biomarkers I not sure what that means but this webpage explains:
"








						fMRI Identifies Potential Biomarker for Huntington’s Disease
					

Scans measure blood volume in the brain, assessing oxygen levels and helping to track progress of gene-editing therapies.



					www.diagnosticimaging.com
				




,


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## ScottySkis (Jul 13, 2021)

A panel of experts has developed guidelines around the ethics of gene editing. The New York Times reports on the committee’s work, which focuses on safety, equity, and burden on patients. HD was considered as an example of a disease where complex ethical issues might arise.









						W.H.O. Experts Seek Limits on Human Gene-Editing Experiments (Published 2021)
					

The panel also called on countries to ensure that beneficial forms of genetic alteration be shared equitably.




					www.nytimes.com
				




#LetsTalkAboutHD #HDSAFamily #HuntingtonsDisease


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## ScottySkis (Jul 16, 2021)

I wish any political parties would care about health issues not just pretend to:

#"""HDSAFamily thanks Rep. Jake Auchincloss for cosponsoring #HR2050 the #HDParityAct. #HuntingtonsDisease families can't wait #2years to access crucial #Medicare benefits through #SSDI. Let's #PassTheHDParityAct in 2021!""


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## ScottySkis (Jul 21, 2021)

From Huntington disease Facebook page:"
"The latest from our friends at HDBuzz! For more info about #HuntingtonsDisease & the #HDSAFamily please visit HDSA.org. 

FULL STORY: https://en.hdbuzz.net/308

#LetsTalkAboutHD #CRISPR





						A first for CRISPR gene editing could have wider applications for human disease  - HDBuzz - Huntington’s disease research news.
					

Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.




					en.hdbuzz.net


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## ScottySkis (Jul 22, 2021)

Huntington disease stuyy to relieve patients symptoms








						UVA Study Aims to Relieve Huntington’s Patients’ Hidden Symptoms
					

A UVA nurse scientist and psychology professor are working together to help Huntington’s patients deal with the “emotional roller coaster” the disease can cause.




					news.virginia.edu


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## ScottySkis (Jul 29, 2021)

HDSA Applauds Energy and Commerce Committee for Highlighting Burden of #HuntingtonsDisease, Reiterates Call to Pass Bipartisan #HDParityAct

Washington, DC (July 29, 2021) – The Huntington’s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee on Health for holding a vitally important hearing today that will spotlight Huntington’s disease (HD) — a rare, inherited, neurodegenerative disease whose patients are uniquely disenfranchised by the current health care system.  

READ FULL PRESS RELEASE: https://hdsa.org/news/hdsa-applauds...erates-call-to-pass-bipartisan-hd-parity-act/

#LetsTalkAboutHD #HDSAFamily


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## ScottySkis (Aug 6, 2021)

Great news for Huntington disease patents trails move on to level 3:
"""








						Neurocrine Biosciences Announces Completion of Enrollment in Phase 3 KINECT-HD Study Evaluating Valbenazine for Chorea in Huntington Disease
					

/PRNewswire/ -- Neurocrine Biosciences, Inc. (Nasdaq: NBIX), in collaboration with the Huntington Study Group, today announced the completion of patient...




					www.prnewswire.com
				



"


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## ScottySkis (Aug 16, 2021)

Great news from Huntington New medicine approved by FDA recently to slow down completely stop Huntington progressive:










						Gene-silencing Therapy for Huntington's Earns Orphan Drug Designation
					

The FDA granted orphan drug designation to Vico Therapeutics’ VO659, an investigational gene-silencing therapy for Huntington’s disease.




					huntingtonsdiseasenews.com


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## ScottySkis (Aug 24, 2021)

New medicine for Huntington D being accepted for patients to use according to this link below
I plan on ask about it at my NYC appointment on Fri:
KINECT-HD2 is an open-label study of valbenazine for chorea in #HuntingtonsDisease that is currently recruiting participants in the USA & Canada. 

Visit HDSA’s HD Trialfinder (hdtrialfinder.org) or the study website: http://KINECT-HD2.org.

#LetsTalkAboutHD #HDSAFamily


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## ScottySkis (Aug 26, 2021)

Tomorrow Huntington disease appointment in NYC at Columbia hospital Huntington clinic use to once a year but since covid they had delayed it about year in half.
I going to ask them about trails and new medicine and getting on them
My aunt is going take me like every year
I looking forward to this
Asking also about medicine that might keep me cooler


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## ScottySkis (Sep 8, 2021)

Huntington disease medicine update: ""After the tominersen flop, Roche is looking at this Huntington’s pact a little differently. The current science says that mammalian adult neurons cannot be replaced, meaning that most R&D for brain diseases tend to focus on slowing disease progress. NeuExcell, however, “may have unlocked the method for regenerating neural tissue,” the biotech contends.
It sees its neuroregenerative gene therapy platform as the key to this, building around transcription-factor-based trans-differentiation tech. The platform seeks to reprogram endogenous glial cells like astrocytes, which surround neurons and are often reactive after neurons are injured or die, into functional new neurons."









						Roche, hoping to move on from recent failure, pens $190M NeuExcell Huntington's disease pact
					

Roche, like so many others in the field, has seen major setbacks in trying to hunt new drugs for Huntington’s disease, but it’s brushing off a recent flop and signing up with a ne | Roche, like so many others in the field, has seen major setbacks in trying to hunt new drugs for Huntington’s...




					www.fiercebiotech.com


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## ScottySkis (Oct 22, 2021)

Huntington D info, below.
For donations and cures to stop it by research below info from today Friday Facebook HD post:

""We are participating in the action warm heart in the Netherlands. 
With this contest we can win a sum of money of up to 10,000 euros and we come a step closer to curing / stopping this terrible disease. So help us and click on the link below and vote for Campaign Team Huntington. Sharing is much appreciated"""





__ https://www.facebook.com/permalink.php?story_fbid=4342381752516047&id=100002327949479


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## ScottySkis (Nov 6, 2021)

Comfortable temperatures in mid Hudson Valley NY today early November Saturday outside high of 50 degres.
Inside it warm to me sun shining I have AC on. Worst part of fuck HD for me is crazy overheating body


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## ScottySkis (Nov 18, 2021)

My Huntington disease
Reasons for  government to please recognized for all us Congress and Senate immediately attention below:
"Dear Kirsten Gillibrand, Congressman Bill Pascrell, Jr., Adam Kinzinger & U.S. Senator Bill Cassidy, 

We need you to help the #HuntingtonsDisease community pass #HR2050 #S868. Speak to your colleagues, and act on your promises to make the #HDParityAct your number one policy priority so we can #PassTheHDParityAct. 





#LetsTalkAboutHD #HDSAFamily
""


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## ScottySkis (Nov 29, 2021)

"Looks like Novartis is setting up to recruit for Branaplam in clinical trials soon.
A Dose Range Finding Study With Open-Label Extension to Evaluate the Safety of Oral LMI070/Branaplam in Early Manifest Huntington's Disease (VIBRANT-HD)
75 participants only. 
Contact: Novartis Pharmaceuticals 1-888-669-6682 novartis.email@novartis.com








						A Dose Range Finding Study With Open-Label Extension to Evaluate the Safety of Oral LMI070/Branaplam in Early Manifest Huntington's Disease - Full Text View - ClinicalTrials.gov
					

A Dose Range Finding Study With Open-Label Extension to Evaluate the Safety of Oral LMI070/Branaplam in Early Manifest Huntington's Disease - Full Text View.




					www.clinicaltrials.gov


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## ScottySkis (Dec 1, 2021)

Help please by getting word out on Huntington D by:
"PLEASE SHARE!
An Op-Ed by Kirsten Gillibrand Adam Kinzinger Congressman Bill Pascrell, Jr. U.S. Senator Bill Cassidy discussing the #HDParityAct. 
To learn more visit https://www.votervoice.net/HDSA/campaigns/85418/respond

Roll Call








						Congress must pass the Huntington’s Disease Disability Insurance Access Act - Roll Call
					

OPINION — Our legislation would remove Medicare and SSDI waiting periods for those who qualify for disability with Huntington’s disease.




					www.rollcall.com
				




Senator Ron Wyden House Speaker Nancy Pelosi Senator Chuck Schumer  Congressman Richard Neal #LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily #passthehdparityact"""


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## ScottySkis (Dec 8, 2021)

How Huntington disease does to HD patients in our cells more recently seen by scientists link below





						“Seeing” the toxic huntingtin protein in people with HD  - HDBuzz - Huntington’s disease research news.
					

New tools let us “see” clumps of toxic huntingtin protein which build up in the brains of people with Huntington’s disease over time. Tracking these clumps might help us to better understand how HD progresses or how treatments might slow or halt HD.




					en.hdbuzz.net


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## ctenidae (Dec 8, 2021)

Scotty - sorry to hear about your diagnosis - you don't need us to tell you it sucks. 

Did a quick search, and there are a dozen clinical trials currently recruiting for Huntington's: 

THIS ONE is a dosing study and very small, but worth a shot depending on your stage and the study requirements.

2, 4, 5, 6, and 7 could be interesting depending on your particular manifestations, too.

I'll keep an eye out for anything coming down the pike. We're kind of focused on preterm birth, early cancer detection, and IBS diagnostics just at the moment, but a lot of clinical and pre-clinical stuff crosses my desk.


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## ScottySkis (Dec 21, 2021)

"PTC Therapeutics released a press release yesterday concerning their new, innovative splicing technology that lowers HTT. The big news about this is their new technology is an oral pill. No lumbar puncture or brain surgery (though I am also excited about Uniqure's study as well. If it works it's worth it!) 
Me Been a lot to be hopeful for lately."





						Oral Splicing Modifiers that Systemically Lower Huntington Disease Protein Discovered Through PTC Therapeutics' Innovative Splicing Platform | PTC Therapeutics, Inc.
					

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.




					ir.ptcbio.com


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## ScottySkis (Feb 22, 2022)

Huntington D way to let people know about this and other horrible illness end of February:.
"""Support the fight vs #HuntingtonsDisease on #RareDiseaseDay! #RDD2022 takes place on FEB 28 - it's our goal is to turn up the global volume for HD awareness & continue to provide world-class resources to families.

LEARN MORE https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily


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## ScottySkis (Feb 24, 2022)

Good Huntington place to donate$$ to help fight it:
"Hi everyone. If for fundrasing for  Scottish "Huntington's Association

If anyone could share this or Donate or both!!!
Would be a great help. Get the awareness out there. The service i am rasing money for is an amazing charity that looks after families with HD. They help with everythifn and also have a service just for children and young carers like myself.
We all know how terrible HD is and we need people to know about it.

My gran had this illness and she fought brilliantly she was my best friend. I love her soo much and miss her every single day. My mum now has it and it breaks my heart she is the sweetest soul in this world. Why oh why.

Anyone with HD in their family has seen it all and does have such a different perspective on life. My view anyway.
Love to you all.


I’m walking 2022km in 2022 

I climbed Ben Lomond recently, up the more difficult trail named Tramigan path it was brilliant.
The wind at the summit was crazyyy strong and freezing cold. My friend was terrified of the wind blowing us off but I just loved every minute. My bum almost froze though

If anyone wants to donate my link for just giving page









						Jasmine's The BIG Sponsored walking challenge 2022
					

Help Jasmine Doyle raise money to support Scottish Huntington's Association



					www.justgiving.com
				




Please Share!!!


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## ScottySkis (Feb 28, 2022)

There are over 7,000 different #rarediseases that affect 300 million people worldwide. The majority are not well understood, and most do not have approved treatments. 

To #HuntingtonsDisease families, a rare disease is anything but rare. Today, there are approximately 41,000 people with Huntington's disease in the United States and more than 200,000 at-risk of inheriting the gene. 

Today is #RareDiseaseDay and our goal is to turn up the global volume for Huntington’s disease awareness and continue to provide world-class HD resources to families across the country.  

Click here to support the fight against HD: https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily #RDD2022


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## ScottySkis (Mar 1, 2022)

Good dominations from yesterday rare disease fundraising including Huntington D
THANK YOU!!!!!
More than $14,130 raised on #RareDiseaseDay to support the fight against #HuntingtonsDisease!

Learn More: https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily #RDD2022


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## ScottySkis (Mar 8, 2022)

Huntington D postive trails going on link below seems good news here below:
'"https://huntingtonsdiseasenews.com/...ks-patients-test-sage-718-cognitive-symptoms/
"


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## ScottySkis (Mar 31, 2022)

Huntington more good trails
Breaking News
PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with #HuntingtonsDisease

FULL RELEASE: 





						PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with Huntington's Disease | PTC Therapeutics, Inc.
					

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.




					ir.ptcbio.com
				




#LetsTalkAboutHD #HDSAFamily





						PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with Huntington's Disease | PTC Therapeutics, Inc.
					

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.




					ir.ptcbio.com


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## JimG. (Mar 31, 2022)

ScottySkis said:


> Huntington more good trails
> Breaking News
> PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with #HuntingtonsDisease
> 
> ...


Leave it to Scotty to post at 420.


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## ScottySkis (Apr 2, 2022)

PBS special most current way technology to reduce Huntington disease
Dr Deepak Chopra Your path
Dr explains how cutting edge neuroscience and ancient wisdom come together to save lives. I recommend it I record it to on PBS channel 13 
Over night tonight 1230am 
And tomorrow at noon both on today date 4/03


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## ScottySkis (Apr 27, 2022)

""The experimental therapy pepinemab can aid cognition in people with early Huntington’s disease who showed signs of cognitive impairment when they started treatment, new analyses from the Phase 2 SIGNAL clinical trial indicate








						#AAN2022 - Huntington's Trial Shows Pepinemab Can Aid Cognition
					

Early-stage patients with initial signs of cognitive problems showed benefits with pepinemab in a Phase 2 trial, supporting further testing.




					huntingtonsdiseasenews.com


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## ScottySkis (Apr 27, 2022)

""The experimental therapy pepinemab can aid cognition in people with early Huntington’s disease who showed signs of cognitive impairment when they started treatment, new analyses from the Phase 2 SIGNAL clinical trial indicate








						#AAN2022 - Huntington's Trial Shows Pepinemab Can Aid Cognition
					

Early-stage patients with initial signs of cognitive problems showed benefits with pepinemab in a Phase 2 trial, supporting further testing.




					huntingtonsdiseasenews.com


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## ScottySkis (May 5, 2022)

About Huntington D is horrible I didn't write it but I agree 100%








						What Is The Cruelest Disease on the Planet? I Say Huntington's Disease – Therese Crutcher-Marin
					

May is Huntington’s Disease Awareness Month    As far as I’m concerned Huntington’s disease (HD) is the cruelest disease on the planet.  John and I lost his three sisters, Lora, Marcia and Cindy from HD complications at ages 41, 49 and 54. Marcia and Cindy struggled with HD for 15 and 17 years...



					theresecrutchermarin.com


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## ScottySkis (May 22, 2022)

To persevere against neurological diseases such as Huntington’s and the aging we all face, I have learned that it is essential to develop meaning and purpose and perform mental exercise. In May 1997, just seventeen months after learning that my mother had HD, a doctor to whom I poured out my heart about her struggles and my own risk told me: just keep doing what you like to do until the disease hits. I have frequently reflected on that advice by imagining the simultaneous challenge and beauty encountered by a surfer riding a wave. “Just keep surfing through life!” I tell myself. During this, HD Awareness Month, we must recognize how the caregiving and financial burdens of HD frequently force affected families to relinquish their dreams. My wife Regina and I have focused on saving, leading us to take usually modest vacations. This year, though, we splurged a bit to celebrate our 30th wedding anniversary with a trip to Hawaii. We found Hawaii wondrous. At a luau we were called to the stage with other celebrating couples to slow dance to a Hawaiian love song. I was introduced to the story of the king of surfing, Honolulu native Duke Kahanamoku, also an Olympic swimming champion. I was intrigued by Kahanamoku. Back home, I sought to build new dimensions of meaning and purpose by exploring his life, joy in surfing, and culture. In Hawaii, Regina and I were frequently welcomed with “aloha,” a philosophy Kahanamoku worked to spread globally. He wrote: “In Hawaii we greet friends, loved ones or strangers with ALOHA, which means with love. ALOHA is the key word to the universal spirit of real hospitality, which made Hawaii renowned as the world’s center of understanding and fellowship.” That solidarity resonates with the fight for human well-being fundamental to the HD cause. In a time of global warming, political strife, and warfare, the world has much to learn from the wisdom of aloha. Read more in my latest blog article. 


			https://curehd.blogspot.com/2022/05/surfing-throug


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## Harvey (Jul 28, 2022)

Cross post from NYSkiForums:

Friends...

I have been getting messages from our beloved @ScottySkis that I don't totally understand.  I believe his Huntington's Disease has progressed (gotten worse) and that is why we haven't heard from him in a while.

He wants to create more awareness about the disease and asked me to post this link:






						#LetsTalkAboutHD with Amy Abbott
					






					tennessee.hdsa.org
				




He also wants to me continue to promote Plattekill, both (at NYSB) and (here) in his Plattekill thread on Alpine Zone.

Say a prayer for Scotty. 

I wish you all the best my man. You always have a kind word to share, and you're a positive force in this world.


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## JimG. (Jul 28, 2022)

Unfortunately, Scotty is starting to struggle more as time passes. But his positivity still shines through. Pretty amazing!

I exchange texts with him daily.


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## Harvey (Aug 1, 2022)

DHS or mods...

Could someone fix the spelling of the first two words in the title of this thread?

@ScottySkis is looking to create awareness of "Huntington's Disease."


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## JimG. (Aug 2, 2022)

Harvey said:


> DHS or mods...
> 
> Could someone fix the spelling of the first two words in the title of this thread?
> 
> @ScottySkis is looking to create awareness of "Huntington's Disease."


Done


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## Harvey (Aug 2, 2022)

JimG. said:


> Done


Thank you Jim!


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## skiur (Aug 3, 2022)

Being that Scotty started this thread, the misspelling seemed appropriate to me.


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## Harvey (Aug 3, 2022)

^^ It's true, Scotty has a unique way with English.  I have asked him multiple times how I could help, and he hasn't asked for anything, but help in creating awareness of Huntington's Disease.  He did thank me and Jim for help in this case.

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. I will let you know what I learn.









						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.


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## Harvey (Aug 5, 2022)

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 @ScottySkis.


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## Harvey (Aug 23, 2022)

Harvey said:


> 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.
> 
> ...


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

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

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


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## JimG. (Sep 18, 2022)

Scotty asked me to post this and to say hello to everyone and to let everyone know he is OK but definitely struggling more with his HD symptoms:

HD trials not me in the study but at least positive news 
Can you post this when you on AZ 
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://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fhdsa.org%2Fwp-content%2Fuploads%2F2022%2F09%2FRoche-Global-Patient-Community-letter_EHDN-2022.pdf&amp;data=05%7C01%7C%7Ceeb601665ecf43d375b208da99cebb64%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637991410429189558%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&amp;sdata=Ko9OHDMqT0Fxdb9NVLx%2BzX3e%2F4jFAYdSBNpnLK6DHu4%3D&amp;reserved=0

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily


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## JimG. (Sep 21, 2022)

Posting again for Scotty. He's having a rough time but hanging in there.

HD great info for tria
""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: """
https://www.globenewswire.com/en/news-release/2022/09/20/2519092/0/en/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-Diseas.html


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## JimG. (Nov 27, 2022)

Scotty wanted me to post this for him. I've always been a huge Arlo Guthrie fan:

https://m.youtube.com/watch?v=q4h4sdNXKXM


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## JimG. (Nov 28, 2022)

More from Scotty:

"Huntington disease best explains:
Education 

•Huntington's disease is a neurodegenerative brain disease. 
•Huntington's disease is caused by the loss of neurons in the brain that causes the brain to deteriorate overtime. 
•The basal ganglia is the part of the brain this disease occurs. Basal ganglia controls movements, behaviors/emotions, and cognitive abilities. The death of the nerves cells in this area of the brain causes malfunctions and symptoms as well as physical damage to the brain. This is what happens when onset of the disease begins and slowly worsens overtime. 
•Huntington's disease is like having Parkinson's, ALS, and Alzheimer's all in one. These diseases also are brain diseases that affect the basal ganglia.
•HD is inherited through a parent with the Huntington's disease gene. A parent with HD has a 50/50 chance of their children inheriting it.
•Mutations in the HTT gene cause Huntington disease. The HTT gene provides instructions for making a protein called huntingtin. Although the function of this protein is unclear, it appears to play an important role in nerve cells (neurons) in the brain. Although recently research/scientists are discovering and trying to find answers to the role of protein. They are learning as we speak 
•The inherited mutation that causes Huntington disease is known as a CAG trinucleotide repeat expansion that is used by numbers that expresses the sequence of expansion.
•These numbers give us an idea of the age of onset. You must be tested for HD to get these results. 
•Although 36-39 are considered highly at risk that may or may not develop the disease. 
•Numbers 40-50 are Huntington's disease positive. 
•50-120+ is juvenile Huntington's disease where children and teens are affected. 
•Here is the tricky part about it, if you get results and numbers between 27-35 you are in the grey area. This doesn't mean you will get the disease, but this doesn't promise your children won't inherit it.
•Anticipation happens with t
his disease where each generation who inherits the disease develops it earlier and has more severe symptoms. 
•Normal range for healthy CAG repeat is 10-26. 
•Everyone has Huntington's, but not everyone has Huntington's disease.
•These numbers determine age of onset, but it isn't always accurate. Most become sick around age 40. Although any age from toddler to late 80s can begin onset of this disease.
•Everyone with HD is different. 
•HD doesn't discriminate. Any age, race, gender, or person can have this disease.

•It is considered a movement disorder although not everyone with HD experiences the chorea (involuntary movements). 
In fact some may just have tremors, dystonia, or twitches. 
•Through the years we have discovered those with more increased symptoms of involuntary movements like chorea do not have much of the mental impairments or behaviors of those without. 
•Others with Huntington's without the chorea symptom experience major mental illnesses. They struggle controlling their emotions/behaviors that is similar to child-like behavior. They seem to be more aggressive/violent with severe depression.

-Anyone with Huntington's can have these symptoms:
•Severe depression
•Suicidal thoughts or thoughts of dying (please seek help)
•Anxiety
•Anger/outburst 
•Impulsive 
•Can not multitask
•Perservation (stuck on thoughts/past/thing)
•Poor decision making
•Poor judgement
•Memory loss
•Trouble with concentration
•Brain fog
•Delayed responses
•Longer to process thoughts
•OCD
•Paranoia
•Delusions
•Insomnia
•Hallucinations
•Slurred speech
•Chorea(involuntary movements that are dance-like)
•Tremors(shakes in hands, vocal cords, and other body parts)
•Twitches
•Dystonia(muscle spasms that results in abnormal posture in hands or pain in other areas of body)
•Clumsiness
•Abnormal gate (slow walk)
•Poor coordination
•Trouble swallowing
There are more too, but these are most common. 

• Huntington's disease has five stages where later stages they can no longer care for them
selves. 

•To reassure the safety of those affected with HD is important to know suicide is common with HD.

Quiz Friday.


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## deadheadskier (Nov 28, 2022)

Give Scotty my best.  Such a great guy


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## Scottyskis2 (Dec 19, 2022)

What it's like to live with huntingdon d from real HD patients:


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## Scottyskis2 (Dec 23, 2022)

#LetsTalkAboutHD with Amy-Jo Adams
“You are not alone! There is support out there, and hopefully, through blogging, I hope to inspire and educate others about #HuntingtonsDisease."
READ HERE: http://nya.hdsa.org/news/106

#HDSANYA #HDSA


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## Scottyskis2 (Dec 28, 2022)

Why we huntingdon disease need a cure yesterday 








						Donate to Huntington's Disease Research – Therese Crutcher-Marin
					

I’m a Huntington’s disease (HD) advocate because my three sisters-in-law, Lora, Marcia and Cindy were victims of the cruelest disease on the planet.  I hope to witness a therapy or even a cure in my lifetime so I chose to be involved with the nonprofit, Huntington’s Disease Society of America...



					theresecrutchermarin.com


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## Scottyskis2 (Dec 31, 2022)

We need to cure this horrible illness adverse oq1 1 to its usually the money unfortunately that stops medical research and treatment trials but for HD more chances on recent few years its be better ways to get HD more manageable than it is now


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## deadheadskier (Dec 31, 2022)

I wish for a great 2023 for you Scotty.  Here's to hoping for major breakthroughs in helping those with HD in the new year.


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## Scottyskis2 (Dec 31, 2022)

deadheadskier said:


> I wish for a great 2023 for you Scotty.  Here's to hoping for major breakthroughs in helping those with HD in the new year.


Thanks u dhs much appreciated 
Same back to you


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## JimG. (Dec 31, 2022)

Happy to see Scotty posting again!


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## Scottyskis2 (Jan 4, 2023)

SCHOLARSHIPS AVAILABLE!
HDSA offers multiple scholarships to help you and your family attend the 38th Annual #HDSAConvention. Whether you are a first-time HDSA Convention attendee, a member of HDSA's National Youth Alliance, or a resident of Louisiana or New Jersey, we will help you get to New Orleans!

Learn more & apply  at https://hdsa.org/about-hdsa/annual-convention/

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily


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## Scottyskis2 (Yesterday at 11:43 AM)

Very true about HD


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## Scottyskis2 (19 minutes ago)

The symptoms of #HuntingtonsDisease can vary a lot from person to person, but they usually include: Personality changes, mood swings & depression, forgetfulness & impaired judgment, unsteady gait & involuntary movements (chorea), slurred speech, difficulty in swallowing & significant weight loss. 

To learn more, please visit HDSA.org. 

#LetsTalkAboutHD #HDSAFamily


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