Huntington's Disease hope for cure everyday

[Scottyskis2]

Help 4 HD is working hard getting ready for HD Awareness Month. We are excited to announce that the portal is open to request this year's awareness package. We want to thank Teva Pharmaseuticals and the Griffin Foundation for making this program possible again in 2023! Over the next couple of weeks, you will also see Help 4 HD asking some questions and getting community input for some of the programs we will be running in May. Please note that there is a limited supply of packages. To see the rules of the program, you can visit the program policy page in the portal.

HD Awareness Packages 2023 | Help 4 HD Internatio

Sign up to receive a couple of HD Awareness items to help you spread HD Awareness during the month of May. Thank you, Teva and Griffin, for making this program possible. Please note this is a first come, first serve program, and supplies are limited.

www.help4hd.org

 

[Scottyskis2]

Ashley Harmon came on to Help 4 HD TV to talk about her experience with being diagnosed with JHD as an adult. She really opens up her heart and is extremely vulnerable in this interview. Check it out here:

#JHD #JuvenileHuntingtonsDisease #HD #HuntingtonsDisease #Help4HD #Help4HDTV #Diagnosis #Awareness Katie Jackson Katrina Hamel

 

[Scottyskis2]

From some one on my page for huntingdon disease we all feel it in different horrible ways:
"https://www.gofundme.com/f/gofundme...heet&utm_medium=copy_link&utm_source=customer"
This disease is taking over I can feel it. I'm so sad. I really need everyone's help right now. I know many don't understand what Huntington's disease is because it's rare. Only 3% of the world has it. Of course I'm one of them. It's worse than cancer. It's worse than anything you've probably seen. It's evil. I'm struggling mentally financially everything. Any help right now would be appreciated."

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Log into Facebook to start sharing and connecting with your friends, family, and people you know.

www.facebook.com

 

[ThatGuy]

Scotty you are in my thoughts and prayers…your posts have educated me to what a truly terrible illness HD is

 

[Scottyskis2]

S4E2: What Happens to a Relationship when You Become a Caregiver? Listen Here: https://every1dies.org/2023/s4e2-caregiver-for-partner-relationship-changes/

In this episode we talk about the changes in an relationship when one partner becomes the caregiver for their partner diagnosed with dementia.

The romantic and intimate relationship changes and with that change comes changes to your role. Michael Porter talks about how he had to learn how to let the relationship with his wife change in the ways that it needed to. Michael joins us in the second of our series of interviews about caring for a spouse with dementing illness.

 

[Scottyskis2]

Marathon #6/12 is checked off and was amazing! Thank you Boston!! Champions for HD, #Shurtofindacure-lets keep this going!! Thank you again to all for all of your support!! If you haven’t had a chance yet open up then link to Champions for HD and read about what this wonderful young lady Shelby Olivia Lentz does for other people, please do. She is HD positive, lost her litttle sister just a short time ago to Juvenile Huntington’s and she keeps pushing forward with her music and her non profit. By the way she is an amazing singer and performer!!
Back to Michigan next month-Bayshore bound!

 

[Scottyskis2]

Hi all! My hubby has HD and I know how the dementia journey takes a toll on our relationship. I have the privilege of working at the Alzheimer's Association, (Name is actually Alzheimer's and RELATED DISORDERS Association). So me and my HD fit it very nicely and I'm able to spread the word about HD. I wanted to create a free VIRTUAL series that not only helps the stress for the caregiver, but helps rebuild the relationships affected by HD. So here it is: Rediscover Love, Care & Happiness in the Dementia Journey...and KEEP IT! 3 in 3 months. Feel free to sign up for 1 or all 3 programs. Part 1 starts tomorrow, April 20th and is going to be amazing: Are You Kidding...LOVE Myself? I'M SOOOOO EXCITED! You can register for Are You Kidding...LOVE Myself? Here: https://www.communityresourcefinder.org/ResourceView/Index?id=2853411&profileDefinitionId=93

 

[Scottyskis2]

ICYM: Maryann Emerick shares her HD story on @Stories from the Stage . Full episode is available at https://worldchannel.org/episode/stories-from-the-stage-brothers-and-sisters/ Maryann’s story starts at 17:43.

#Huntingtonsdisease #Familyiseverything #HDSA

 

[Scottyskis2]

I am listening to my favorite movies from my bedroom today so I go less to the bathroom
Reality bites and mjjjj and coffee feels like heaven is close
What for lunch
Eggs here prepared by Myrtle yesterday
All I do is stay in the fucken bathroom and piss more each second of the day goes worse

 

[ThatGuy]

Whats your top three favorite movies Scotty?

 

[Scottyskis2]

Clerks
Music concert s live from the 70 s
American beauty
( they changed from time to time)

 

[ThatGuy]

Haven’t seen Clerks, but American Beauty is one of my favorites too.
Love The Last Waltz and the Bob Dylan Rolling Thunder Revue that recently came out.

 

[Scottyskis2]

Haven’t seen Clerks, but American Beauty is one of my favorites too.
Love The Last Waltz and the Bob Dylan Rolling Thunder Revue that recently came out.

I also love the last waltz and own it and play it often to.

True guess my mouth issues are bothering me more all the time everything inside me feels bad
All I do all day is going the bathroom when I eat or drink it's not a feeling any more
I know the Dr and dental don't see it but it started last summer when I went to hospital 3 days slowly progress over time I not killed my self but my body is

 

[Scottyskis2]

Congressman Erik Paulsen will be joining me this Thursday at 4pm ET to talk about the Institute for Gene Therapies (IGT) and what they are doing to help rare disease communities be able to afford gene therapies. Make sure to tune in!

April 27 at 4 pm

 

[Scottyskis2]

Huntington disease u tube good details on HD patients

 

[Scottyskis2]

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"

 

[Scottyskis2]

MAY IS HD AWARENESS MONTH | #LETSTALKABOUTHD

Help us turn up the global volume on HD awareness by posting videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that H#familyiseverything

This May #LetsTalkAboutHD - Huntington's Disease Society of America

HELP US TURN UP THE GLOBAL VOLUME ON HD AWARENESS! #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – HD impacts every family differently and...

hdsa.org

#HDSA #HuntingtonsDisease #HDAwarenessMonth #Familyiseverything

 

[Scottyskis2]

Early signs of HD.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong
#championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion #jhdchampion

 

[Scottyskis2]

Symtoms of HD, on average, begin between 30-40s.

To learn more or donate, visit: https://www.championsforhd.org/

#HDAwarenessMonth #HDCantTameMe ⁠#BreStrong #championsforhd #hdawareness #huntingtonsdisease #juvenileHD #curehd #curejhd #juvenilehuntingtonsdisease #raredisease⁠ #jhdwarrior #jhdawareness #juvenilehdwarrior #hdwarrior #hdchampion

 

[Scottyskis2]

The first drug trial in HD 1989 - failed like all following drug trials because of TFC:
A Controlled Clinical Trial of Baclofen As Protective Therapy in Early Huntington's Disease by Shoulson et al.
DOI: 10.1002/ana.410250308
The patients receiving placebo did not deteriorate as patients usually do. The authors quite rightly wrote:
"Our patients declined at a pace slower than that observed in other prospective studies, a finding likely due to selection criteria, avoidance of neuroleptic therapy, and strong psychosocial support."
Patients and familis had 24/7 support available during the study, reducing the level of stress significantly (Ira Shoulson agreed with my interpretation of results).