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

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
 
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
curehd.blogspot.com

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

curehd.blogspot.com curehd.blogspot.com
 
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.

www.help4hd.org

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

www.help4hd.org www.help4hd.org
 
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
 
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
 
🎁 Last-minute Black Friday shopping alert! 🎉 Dive into the spirit of giving with HDSA's exclusive Amaryllis collection! 🌸 Every purchase contributes to improving the lives of those affected by Huntington's disease and their families.
🛍️ Shop now: http://HDSA.fpfundraising.com
Turn your last-minute buys into meaningful gestures this holiday season. Let the joy of giving and the beauty of hope blossom with every Amaryllis purchase. 🌷💙 #BloomWithPurpose #HDSA #AmaryllisCollection #LastMinuteShopping
 
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