• Welcome to AlpineZone, the largest online community of skiers and snowboarders in the Northeast!

    You may have to REGISTER before you can post. Registering is FREE, gets rid of the majority of advertisements, and lets you participate in giveaways and other AlpineZone events!

Huntington's Disease hope for cure everyday

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
This week on #Help4HDLive Lauren welcomes Matthew Roche from CHDI to discuss developing therapeutics specifically focused on #HuntingtonsDisease! Listen TOMORROW at 1pm PST here: https://www.blogtalkradio.com/help4hd

Can't make the live podcast? Listen later on your streaming service: Spotify, iTunes, iHeartRadio, or Blog Talk.
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
HD great music person rock and roll er who had the horrible illness.
"On this date in 1912, music icon Woody Guthrie was born. Woody died from #HuntingtonsDisease when he was only 55 years old, but the Guthrie Family legacy lives on at HDSA to this day. In 1967, his wife, Marjorie, founded the Committee to Combat Huntington's Disease - known today as the Huntington's Disease Society of America.
#LetsTalkAboutHD #HDSAFamily #HappyBirthdayWoody"

 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Happy Monday bad HD and Kids and much worse than my every one with this horrible fucken illness needs support
""Update on Adventures for Autumn 😎 2023 Summer Road Trip!!!

THANK YOU ALL FOR MAKING THIS DREAM COME TRUE!!! 🙏💜🙏💜🙏💜🙏

On August 1st, Autumn and I will be heading out on an EPIC (3 weeks) mom and daughter ROAD TRIP! 🤩 And all thanks to the generous donations from all of you!! - our friends, our family, our followers, and our HD/JHD community. THANK YOU for all coming together to make this happen for my daughter. It's the greatest gift I could ever ask for and I'm so excited for our journey to begin!

We've planned our route (see photo) and now I'm working on planning our days out & how long at each location... Lots to do. 🤔

We 're social butterflies and we want to see & meet as many of you as possible along our journey!! So if you're going to be IN or NEAR any of these places on our map and you wanna meet up - WE'D LOVE THAT!! Please comment or reach out to me. I'm keeping a list together! 📝

I have been SO excited about this dream actually coming true!! It's literally going to be the trip of a lifetime. I've been thinking about all the cute little things I could make for the trip and the first thing I knew I wanted to make was a road trip logo, and some road trip merch. 🤔 And today I created this reverse tie dye t-shirt (see photo) with our official logo! 🤩 What do you guys think?? I plan on creating as many of these t-shirts as possible (as many will fit into 1 suitcase) to have available for people that we meet, meet up with or stay with along our road trip. They're limited edition, and they're special because they'll only be available to the people we meet or see, along our road trip!! Actually, I take that back- I will also be giving one to everyone who comes to the fundraiser at Pain For Sale Tattooing and Piercings Gillette Wyoming on July 22, and gets a purple and blue butterfly tattoo! 💙🦋💜

I am so grateful to everyone who has donated to this amazing adventure, that I'm going to get to now give my beautiful daughter, and... I wanted to figure out a way that I could use this trip that you all are giving us - to GIVE BACK to our community!

So.... 😁 100% of the donations we receive from the road trip t-shirts (asking a $50 donation for each shirt) we will be turning around and DONATING BACK to Help 4 HD International for their amazing JHD Scholarship Fund. This fund has helped so many JHD kids, including Autumn, to travel to Help4HD's education events and we're so grateful to their organization for all they do - specifically for all they do for our JHD kids & community. 💜 With that said, if you know you're going to see us on our road trip, and you'd like an official "Adventures for Autumn Road Trip t-shirt", I'm gonna try my best to make enough sizes that fit everyone, so let me know your size ASAP!! No donations for the shirts now - just sizes please.

WE LOVE YOU ALL, and...I truly can't thank you enough for helping me make this trip of a lifetime happen for me and Autumn. Can't wait to see everyone and meet everyone and make memories with everyone!! It's gonna be so great!! 💙💜💙💜
#JuvenileHuntingtonsDisease #adventuresforautumn #roadtrip #JHD #bucketlisttravel #momanddaughter"
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Here is a survey that has been put out by Jordan Steffen, a genetic counselor student at UTHealth in Houston. https://redcap.uth.tmc.edu/surveys/?s=NXK3WMDK8LF7W984
The purpose of this study is to help better understand the motivations, barriers, and attitudes of pursuing anonymous genetic testing for HD. You are eligible to participate in this study if you are an English-speaking adult (18 years or older) living in the United States who is either:

● At-risk for inheriting HD and have not undergone genetic testing

● Was at-risk for inheriting HD and tested negative

● Was at-risk for inheriting HD and tested positive

If you completed genetic testing for HD, it did not have to be done anonymously in order to be eligible for the study.

If you have any questions, please contact Jordan Steffen jordan.steffen@uth.tmc.edu

** If you participate in the survey, you will be entered into a drawing for an Amazon gift card (this is through the survey, not Help 4 HD).
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Just fucken found out I can't leave the nurse home only when friends or family here to get food to eat very annoying about this not surprised at all it does make much sense for people who are able and not sick yet
Right by the Catskills and can see them from my window but can't go there anymore even though there only 15 miles away
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Listen TOMORROW to #HDUncut on our #Help4HDLive podcast at 1pm PST. Mother and daughter, Erika and Olivia Gupta-Eiger share their #HD/ #JHD story. Tune in here: https://www.blogtalkradio.com/help4hd

Can't make the live podcast? Listen later on your streaming service: Spotify, iTunes, iHeartRadio, or Blog Talk.
 

Rambo

Member
Joined
Sep 8, 2008
Messages
891
Points
18
Location
Binghamton, NY
Just fucken found out I can't leave the nurse home only when friends or family here to get food to eat very annoying about this not surprised at all it does make much sense for people who are able and not sick yet
Right by the Catskills and can see them from my window but can't go there anymore even though there only 15 miles away
Scotty - So they won't let you out for a day trip with friends? That sucks. Hope you are feeling better. Are you getting enough exercise? Maybe me and Cornhead can come and visit you soon again in Rhinebeck.
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Scotty - So they won't let you out for a day trip with friends? That sucks. Hope you are feeling better. Are you getting enough exercise? Maybe me and Cornhead can come and visit you soon again in Rhinebeck.
That be awesome if you guys come back soon and that up to the nurse home to go on individual decisions and since my health issues are not getting better I OK to stay here 224 hours a day
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Meet the #HDExperts on our #HIPE panel ready to answer your questions at our #Help4HD event! #DetroitMI #Help4HDHIPE2023

🔹 Dr. Sandra Kostyk: Medical Director of the #HDSA Center of Excellence at The Ohio State University
🔹Dr. Morgan Faeder: UPMC Consultation-Liaison #Psychiatry fellowship program director
🔹 Dr. Bonnie Hennig-Trestman: Director of the Carilion Clinic #HuntingtonsDisease Program
🔹 Patricia Conlon: Clinical #Research Coordinator at UPMC HD Center of Excellence

Register here:: https://www.help4hd.org/events-1/help-4-hd-international-hipe-detroit-mi
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Scotty - So they won't let you out for a day trip with friends? That sucks. Hope you are feeling better. Are you getting enough exercise? Maybe me and Cornhead can come and visit you soon again in Rhinebeck.
Thank you guys for the visit on Saturday great time
Glad we are friends great ly
Wish I was not far from Bing but that is life come back anytime.
Find out what signs helped Erika Gupta-Eiger initiate gene testing for her daughter Olivia on this episode of HD Uncut. #JuvenileHuntingtonsDisease #Help4HD #GeneticTesting

Check out the full episode on #Help4HDLive: https://www.blogtalkradio.com/help4hd/2023/07/27/hd-uncut-ep-5--erika-and-olivia
"""
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Submit your abstract by August 6th for the opportunity to be published in the Journal of #HuntingtonsDisease!

Have you been working on HD research? #HSG2023 is an opportunity to present your findings to the HD community in Phoenix, Arizona!

Don't miss out!
Learn more: https://bit.ly/424pFKO
Submit your abstract: https://bit.ly/3JTFBcV
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Sorry I haven’t posted here with my creative exploits with my podcast and writing. The last couple of weeks I have kept things simple. These group means the world to me with everything HD. I apologize. Here is our latest episode we talk about Oppenheimer and rank Christopher Nolan’s filmography. I have updated the world that the last two movies I have seen in IMAX have overstimulated me like I haven’t felt before watching a movie. What the world doesn’t know is that editing the podcast and writing a review is really taking a lot of me energy wise. I hate this disease. Thankfully I have always been passionate and remembering to always pick myself up even though it gets a bit trickier each day. Love you all. ❤️🤙❤️


 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
Being a caregiver for someone with Huntington's Disease is such a huge endeavor. Come share, listen, connect. HD Caregivers' Support Group - Tuesday 2pm PST. Inbox us for the zoom link or contact us here: https://www.help4hd.org/contact #Help4HD #HDCaregivers #HuntingtonsDisease
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
It’s important that in everything we do, in every event we host, that we always remember the reason we are here. The reason we advocate, support, and have community is all due to our #HDheroes We hope by collecting and featuring these stories, that we can continue to inspire and remind everyone why their support is needed. Please submit your HD Hero by either clicking the link below, visiting our Linktree, or checking out the HD101 section of our website.


#HDreach #ReachForHope #ReachingForHope #curehd #curejhd #raredisease #huntingtonsdisease #hd #jhd #huntingtons #letstalkabouthd
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
This is terrible. Please let us know if there is a research effort to which we can donate.

I hope you keep posting.
#HSG2023 Session Highlight!
Don't miss Neurocrine Biosciences' Medical Director, Dr. Klepitskaya, discuss the FDA's approval of valbenazine for the treatment of chorea at this year's Annual Meeting on Nov. 3rd! #HuntingtonsDisease

REGISTER NOW: https://bit.ly/HSG-Annual-Meeting
HSG 2023 AGENDA: https://bit.ly/2023-Agenda
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
403
Points
28
UPDATE- NEW Goal for Founder's Day 2023
Together we raised over $50,000, and we could not have done it without you- thank you.
We are so grateful for the Guthrie Family and the work they continue to do to advocate for HD families and carry on Marjorie's legacy in a special way. Their support inspires us all today, and reminds us about the power and strength of ONE HDSA FAMILY.
Because of YOU, we are carrying Marjorie's legacy together to spread awareness, invest in research, and provide essential resources to improve the lives of those with HD. And in her honor....we are INCREASING our Founder's Day Goal to $56,000- for 56 years of Marjorie's Legacy.
Only a few hours remain to be a part of this incredible moment. Help us reach our NEW $56,000 goal!

 
Top