Huntington's Disease hope for cure everyday

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H
The trial, conducted by biotech company uniQure, is the first for a one-time gene therapy for Huntington’s disease. This is one of the diseases where we absolutely understand the cause, said [Ricardo Dolmetsch](https://www.uniqure.com/pioneers-leaders/leadership/dolmetsch-ricardo), president and chief scientific officer of uniQure. We thought that this is a place where there was a nice mix between what our technology can do and the really giant unmet medical need.”

A gene therapy hope for halting Huntington’s disease

A one-time gene therapy aims to stop Huntington's disease at its source. But first, it has to survive clinical trials.

www.drugdiscoverynews.com

 

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Join us for the 6th Annual Champions for HD Benefit Concert!

Tickets & more information: https://www.championsforhd.org/benefitconcert
*early-bird ticket discounts END Sunday, October 22nd. Order now!

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

 

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No one is safe here at this nurse home it's like the shinning movie where mangers pretend to care about us but it the opposite the place is falling apart the only care about money not treating us clients or staff and the place is literally falling apart and should be the opposite in every way possible
21 Ferncliff Dr, Rhinebeck, NY 12572
Archcare.org
Archcare at Ferncliff NY
Nurse home and Rehab center is terrible for every one here and very unsecured and unsafe .

 

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You may recognize Lauren Holder from #Help4HDLIVE! She will be sharing her experiences as a caregiver & the transition from being at-risk to testing positive for Huntington's Disease. We can't wait to see you there! Register for this FREE event! #SanDiegoCA #Help4HDSympo2023 #HuntingtonsDisease

Help 4 HD International Symposium 2023, San Diego | Help 4 HD Internatio

Join us in San Diego on October 13th and 14th for Help 4 HD International Symspoium, 2023. We will be hosting a Welcome Reception on October 13th. We will be hosting a full education series with breakout sessions followed by an evening celebration on October 14th. Hope to see you there!

www.help4hd.org

 

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HD new medicine that works for us patients
#HDSAFamily Important update from Roche-Genentech. GENERATION HD2 Study Enrolling in All 15 Countries. See community letter from Roche-Genentech

https://hdsa.org/wp-content/uploads/2023/10/Roche-Genentech-community-letter-GENERATION-HD2-study-status-update.pdf

#HDSA #HuntingtonsDisease #familyiseverything

Benefit Concert Performers

mailchi.mp

Joining us in San Diego is a lead medical scientist from Sage Therapeutics, Dr. Grant Rutledge! Join us on October 14th for this FREE education event! #SanDiegoCA #Help4HDSympo2023 #HuntingtonsDisease

Help 4 HD International Symposium 2023, San Diego | Help 4 HD Internatio

Join us in San Diego on October 13th and 14th for Help 4 HD International Symspoium, 2023. We will be hosting a Welcome Reception on October 13th. We will be hosting a full education series with breakout sessions followed by an evening celebration on October 14th. Hope to see you there!

www.help4hd.org

 

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Another amazing panel of passionate #HDExperts ready to hear from you on October 14th at #Help4HD Symposium in #SanDiegoCA! Register now for this FREE #HD education event! Link in bio. #Help4HDSympo2023 #HuntingtonsDisease

Dr. Erin Furr-Stimming: #HDSA Center of Excellence at UTHealth, McGovern Medical School Founder & Director
Dr. Victor Sung: Director of the UAB Huntington's Disease #Clinic
Dr. Jordan Shultz: Assistant Professor of #Psychiatry, #Neurology, & Pharmacy Practice
Susan Reynolds: HDSA Orange & San Diego Counties chapter #SocialWorker

Register here: https://www.help4hd.org/events-1/help-4-hd-international-symposium-2023-san-diego

 

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We are thrilled to announce the arrival of Amaryllis season! Explore our fantastic selection of 6 exquisite amaryllis varieties and captivating paperwhites. With a total of 19 stunning products to choose from, your options are abundant.
Purchase today! https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa

 

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HD good medicine potential from trials for patients
Are you interested in the Generation-HD2 trial? Dr. Rita Gandhy discusses past findings from the Generation-HD1 clinical #HDtrial and shares details of HD2 which is currently enrolling. Listen TOMORROW on #Help4HDLive at 1pm PST! https://www.blogtalkradio.com/help4hd

Listen later on your streaming service: Spotify, iTunes, iHeartRadio, or Blog Talk.

 

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Benefit Concert performer: Sarah Dudinetz

Sarah Dudinetz | Sincerely, Sarah

A pageant girl from Michigan with some stuff on her heart from time to time. Just happy to be here.

www.sarahdudinetz.com

Get your tickets/dinner tickets BEFORE the ealy-bird pricing ENDS!

Annual Benefit Concert | Championsforhd

www.championsforhd.org

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

 

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About HD effects every one who gets it different;
"Good news! "A new study led by researchers at Boston Children's Hospital and Harvard Medical School reveals how the process of Huntington's disease begins well before symptoms appear - and shows that in mice, the process can be blocked to prevent cognitive problems related to Huntington's.":

Research Advances Early Intervention, Blocks Mice Cognitive Symptoms

At a glance: By NANCY FLIESLER | Boston Children's Work in patient tissue samples and mouse models reveals that two players in the

www.miragenews.com

 

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Tune in tomorrow at 4 PM ET/1 PM PT for our Hereditary Disease Foundation Young Investigator's Series! Dr. Killian Hett from Vanderbilt University Medical Center joins me to talk about using MRI technology to research HD. REALLY interesting stuff!

 

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HDSA's TCS New York City Marathon Team has now raised more than $123,000 to support the fight against #HuntingtonsDisease! We shared an amazing afternoon with some of the team! Good luck to all the runners and THANK YOU!!

Show this amazing team some love by liking this post and remember to cheer them on this Sunday!

Learn more about the team at https://hdsa.org/get-involved/nyc-marathon-team/

#LetsTalkAboutHD #HDSAFamily #NYCMarathon #tcsmarathon

 

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HD donation

Today is the day! Help us reach our goal of $20,000!

Donate: https://www.championsforhd.org/donate

Text to give!! You can donate from anywhere by texting "GIVE“ to (855) 795-2317

Livestream the show:

Virtual (Live Stream & Auction) | Championsforhd

www.championsforhd.org

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

 

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She won!!! Congratulations to outstanding graduate student Jj Waldo for receiving the American Society of Human Genetics Trainee Research Excellence award for her work in #huntingtonsdisease! “Durable #HTT silencing using non-evolved #dCas9 #epigenome editors in patient-derived #neuronal cells.”
So proud of her and happy that she got this recognition for her hard work!
#ASHG2023 #ASHG23 #genetherapy

Thank you @help4HD and all of those who have helped support this excellent work. Dr. Kyle Fink and I have an NIH grant together to deliver gene therapy for Huntington’s disease and JHD, but JJ’s work has evolved past that. The donations support amazing new ideas like this!

 

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Before we get into my rant (more pics coming tomorrow) I would just like to say how incredibly proud I am of Autumn Tabor !! This year marks 11 YEARS that she has happily been coming back to the University of Iowa for the JHD research study. Get it girl!! When I was thinking about it today...that's almost 3/4 of her life that she has been involved in observational research for HD/JHD!

As I was looking through photos to make this celebratory collage honoring 11 years that Autumn has been participating in research I went down... sort of a depressing rabbit hole? I found the photos I needed for the collage, but...I also found myself turning the volume all the way down on my phone (this is not the first time) just in case an old video accidentally started playing while I was scrolling through. And not because I'm trying to be quiet, it's because hearing Autumn's "old" voice or being reminded of something she could do just 1 year ago or 5 years ago - that she can no longer do... Memories are SO INCREDIBLY PAINFUL!!! It seems like more and more social media sites are adding "memories" to it's users features. TikTok just started doing this too. Google Photos even puts together cool things like "then & now" made from your photos but... for me - when these notifications come up I immediately dismiss them because I don't want to be reminded of how much things have changed. Idk, I guess this is my way of coping.

While other parents watch their kids grow up, we are witnessing the devastating opposite. FU(K Juvenile Huntington's Disease!!! I try my best to (and for the most part succeed) stay positive, but while Autumn and I share a whole lot of laughs, love, smiles with all of you - it's not all sunshine and rainbows for our family. In fact, it feels like everyday is an unpredictable thunderstorm and I am trying my best to hold onto the umbrella, but I know that together our family will weather the storm.

#JuvenileHuntingtonsDisease #HuntingtonsDisease #jhdawareness #jhdwarrior

 

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A new book portrays the largely unexplored personal and psychological context of the quest to understand and defeat Huntington’s disease: a biographical memoir of Milton Wexler (1908-2007), the founder of the Hereditary Disease Foundation (HDF) and key mover in the discovery of the HD gene. Wexler’s daughter, historian Alice Wexler, has published “The Analyst: A Daughter’s Memoir.” She is a longtime HD advocate and chronicler of the cause. This year marks the 30th anniversary of the discovery of the huntingtin gene. Through the HDF and in collaboration with a global team of scientists, Milton and his neuropsychologist daughter Nancy, Alice’s sister, spearheaded the hunt for the gene. The discovery of huntingtin “immediately transformed Huntington’s research,” Alice writes. “Suddenly it was possible for researchers to make animal and cell models and study how the gene worked at the cellular and molecular level. They could test drugs and other molecules in mice and sheep, fish and flies, as well as in human beings.” Milton was “ecstatic and also relieved,” Alice recalls. “We even allowed ourselves to imagine that a treatment, and possibly a cure, might be on the horizon.” Portraying Milton’s main career as a psychoanalyst, “The Analyst” is a key reminder for HD families in need of assistance with the disease’s many social and personal challenges that helps is available in the form of individual and family therapy. He believed that people should not have to struggle on their own. With new material and perspective, Alice expands on the difficult moments regarding her mother’s diagnosis, Milton’s deep fears that his daughters would be affected, and his “frantic search for information” about HD and scientific contacts that in a matter of weeks spurred the concept of the HDF. Milton advocated for a multidisciplinary approach to solving HD and other neurological disorders. He championed the interplay of psychoanalysis and neuroscience in a move critical for HD research. He also grasped the growing importance of molecular genetics and its potential value for Huntington’s. Alice’s warm portrayal of her father in “The Analyst” shows how he helped the HD community advance in understanding the disorder and seek anxiously awaited treatments to slow, stop, or reverse the disease. Read my review of “The Analyst” in my latest blog article. https://curehd.blogspot.com/2023/11/new-book-by-longtime-advocate-describes.html

New book by longtime advocate describes Milton Wexler’s incomparable contributions to Huntington’s disease research and beyond

curehd.blogspot.com

 

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HD show
Did you catch our show last week with Dr. Katja Obieglo from Vico Therapeutics? Here's the link to listen to the full show: http://tobtr.com/12286401

TikTok - Make Your Day

www.tiktok.com

 

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Holiday Relief Update:
The first round of holiday relief filled up early this morning. We have released a couple more because this year's need is so great. Unfortunately, for this round, we can only help 40 more families on top of the over a hundred families supported by the first portal that filled up just a little over 24 hours after its opening.

This shows us how vital the Help 4 HD Reief fund is. We are set to help hundreds of families this year. If you didn't make it into the November portal, we will be releasing three more programs in December.

Here is the link to the 40 more spots we opened up this morning. If you applied already, please do NOT apply again. We will cross-reference to make sure each household only gets one, but if we have people applying multiple times, it will shut down the portal for people who need it but have not applied yet.

Help 4 HD Help 4 the Holidays (1) | Help 4 HD Internatio

www.help4hd.org

 

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This holiday season, bring some cheer, spread some hope, and make a meaningful difference! With the purchase of an Amaryllis kit from HDSA, you can bring joy and support to the local programs and services across the country. For every kit purchased, HDSA will receive a generous donation of $11, and with that, you can help HDSA's mission of providing help and hope to individuals and families affected by Huntington's disease. Celebrate the true spirit of the season and purchase your Amaryllis kit - https://HDSA.fpfundraising.com today, and help us take a giant step in our mission! #HDSAFamily #HelpHopeBlossom #SpreadHope

 

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I’m very excited to announce my book Livable Lives is coming out in 2024! #LivableLives #HuntingtonsDiseaseAwareness

My name is Christy, and I first learned the name of the disease that has affected my family for generations when my brother was diagnosed with Huntington’s disease in 2014. Learning that many of my family members – including me and my kids – were at-risk for the same disease turned my family’s world upside down.

After I tested negative in 2019, I couldn’t shake the idea that I wanted to tell the HD story in a new way. This complicated disease cannot be captured by one story, and maybe not even by a handful of stories. Since early 2022, I’ve interviewed over 30 people from 10 countries on 5 continents, and I now have a much deeper understanding of Huntington’s disease and how it affects individuals and families.

I want to thank HDYO (Huntington's Disease Youth Organisation) helping me reach out to the HD community to find people interested in sharing their stories. The book took on a life of its own after you sent out my request!

My book will be available in 2024. Until then, I look forward to sharing more about the journey of writing this book and connecting with members of the HD community.

Thank you to I'm not drunk - Lifestyle Blog and many others who have made this possible. Your support for this book has been amazing. I feel honored that so many of you have trusted me with your stories.

#HuntingtonsDisease #HDconversations #HDstories #HDawareness