HDYO
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HDYou Community Stories: Chronicle of a Fortune Foretold
Bringing community stories to you! This month’s edition of HDYou Community Stories features Luis from Spain. Luis comes from a #huntingtonsdisease family and like many young people, found the burden and fears of being at-risk challenging. He turned his experiences into a book to help others and tell his story.
“I am another human being with a backpack on my shoulders. My backpack, as everyone’s, is full of many different things. But there is one thing that is heavier for me than the rest, to the point that no matter how much I remove the backpack, it still weighs the same. In the Chronicle of a Fortune Foretold, I tell how I walk with this burden so that, even if it does not take the weight off others who also carry it on their backs, at least we can walk together.”
Thank you to our sponsors: Sage Therapeutics, Roche Teva Pharmaceutical, uniQure, Wave Life Sciences, Griffin Foundation and Neurocrine Biosciences.
Переглядів: 37

Відео

HDYO Impact
Переглядів 464 години тому
HDYO continues to impact the global community of young people impacted by HD.
HDYO Research Update: Two Birds One Stone - HTT-lowering drugs also target CAG expansions
Переглядів 3214 днів тому
This edition of the Research Video Series features the HD Buzz article, Two Birds One Stone. In a surprising twist, oral HTT-lowering drugs also slow somatic expansion in the HTT gene. A new study that used cells in a dish for this fortuitous discovery identified the gene PMS1 as a key player in the slowing of CAG expansions. Read the entire HD Buzz article, en.hdbuzz.net/367 The Research Video...
Breaking Down Barriers - Cultural Stigmas Around Huntington's Disease
Переглядів 8728 днів тому
HD has no borders, and we continue to talk about different experiences across the globe. Join us Thursday as we speak with Megha (India/UK), Mustafa (Pakistan/Canada) and Anne Elizabeth (Sweden/Colombia) about their experiences. Multiple languages will be offered in closed captioning. Thanks to the Breaking Down Barriers Sponsors! Sage Therapeutics, Roche, Teva Pharmaceuticals, uniQure, Wave Li...
HDYO Research Video Series: Understanding Expansions at the Single Cell Level
Переглядів 30Місяць тому
In this edition of the Research Video Series, we explore the HD Buzz article, Understanding Expansions at the Single Cell Level. Scientists have looked at CAG expansions in brains from people with HD to see which cells are affected. To read this complete article, visit: en.hdbuzz.net/360 Research Video Series Sponsors: Roche, Sage Therapeutics, Teva Pharmaceuticals, uniQure, Wave Life Sciences,...
HDYou Community Stories: Being Impacted by Juvenile HD
Переглядів 191Місяць тому
On this HD Awareness Day, we are showcasing the impacts on two young people living with Juvenile Huntington's Disease (JHD), which is even more rare than HD. HDYO Ambassador, Claudia (Italy), interviewed two other ambassadors, Josh (Scotland), and Ashley (US), to understand their experiences including their hopes for the future. Some topics may be triggering given your own personal experiences ...
HDYou Community Stories: Robyn's Testing Story
Переглядів 246Місяць тому
Robyn talks about her experiences throughout the testing process for #huntingtonsdisease. Wes Solem from HD Genetics facilitated the conversation on behalf of the HDYO Education Committee. Join us on UA-cam and Facebook tomorrow. *Trigger warning - Robyn did test positive for the HD gene. At any time, if you need support or someone to talk to, we are there for you! Multiple languages are availa...
A Deeper Look Into HonestlyHD.com
Переглядів 572 місяці тому
Teva Pharmaceuticals created an educational and informational website about chorea associated with Huntington's disease. This was developed after discussions with the community revealed some unmet needs in regards to chorea. We took a deeper look at these resources with Christine Foy from Teva to learn how this information can benefit the HD community at different stages of the disease.
HDYO Research Video Series - CRISPR-Based Drugs: One Giant Leap for Mankind
Переглядів 552 місяці тому
This month's edition of the HDYO Research Series focuses on the HD Buzz article exploring Casgevy, the first CRISPR-based drug to make its way through the approval process, all but curing Sickle Cell Disease and it’s paving the way for similar drugs targeting other diseases. Is Huntington’s disease next? To read this complete article, visit: en.hdbuzz.net/356 Research Video Series sponsors: Roc...
Breaking Down Barriers - A Conversation About Cultural Stigmas & HD
Переглядів 952 місяці тому
HD has no borders and the impacts affect many different cultures across the globe. However, we tend to hear only from certain community members for many reasons. Some of those reasons may include different cultural barriers when it comes to interacting with the advocacy, support and medical/research communities. We were honored to be joined by Dominique Thomas from Ochsner Health in the US, HDY...
Breaking Down Barriers - Genetic Modifiers and HD
Переглядів 1543 місяці тому
You may know about the huntingtin gene and how CAG repeats can show if an individual will develop Huntington's disease. But do you know that there are studies that show other genes may play a role in issues like disease progression? We sat down with two experts about genetic modifiers to learn more with Dr. Nayana Lahiri, Dr. Thomas Massey and Rhiannon Ireland. Breaking Down Barriers is sponsor...
Hablar de la EH con sus hijos (Talking about HD with children Spanish Version)
Переглядів 113 місяці тому
Hablar de la EH con sus hijos (Talking about HD with children Spanish Version)
HDYou Community Stories - Vivir Con Ella
Переглядів 2183 місяці тому
We continue to share the many different experiences of the global community impacted by Huntington's disease. Javier Lafuente has been raising awareness about HD since his wife was diagnosed. He joined HDYO Ambassador Claudia to learn about what inspired him to create his blog and social media presence, Vivir Con Ella, and give his advice to young people impacted by HD. This conversation is in ...
HDYO Research Video - Steady Progress from uniQure
Переглядів 583 місяці тому
This edition of HDYO Research Video Series features the HD Buzz Article reviewing the latest news about the uniQure trial looking at AMT-130. uniQure ushered in the end of 2023 by releasing some promising data from their huntingtin-lowering gene therapy trials. To read the full article, visit: en.hdbuzz.net/355 The Research Video Series is sponsored by Teva Pharmaceuticals, uniQure, Wave Life S...
Breaking Down Barriers: Understanding Expanded Access
Переглядів 1244 місяці тому
As clinical trials progress, it's imperative that the community continues to grow in its understanding of different topics like expanded access programs. We took a deep dive into this topic featuring Henk Schuring from Prilenia and HDYO Ambassador, Help4HD volunteer and advocate, Lauren Holder. Videos will be archived on Facebook and UA-cam after the premiere as well. Breaking Down Barriers is ...
HDYO's Prata om HS med dina barn/Talking to children about HD Video (Swedish version)
Переглядів 164 місяці тому
HDYO's Prata om HS med dina barn/Talking to children about HD Video (Swedish version)
HDYou: Community Stories - Asking for Help
Переглядів 3704 місяці тому
HDYou: Community Stories - Asking for Help
Breaking Down Barriers - Conversations Around Suicidal Ideation and Self-Harm
Переглядів 1374 місяці тому
Breaking Down Barriers - Conversations Around Suicidal Ideation and Self-Harm
Research Video Series: Regulating Repetition
Переглядів 334 місяці тому
Research Video Series: Regulating Repetition
Breaking Down Barriers - Access to HD Research
Переглядів 2025 місяців тому
Breaking Down Barriers - Access to HD Research
Breaking Down Barriers - What is a Biomarker?
Переглядів 3776 місяців тому
Breaking Down Barriers - What is a Biomarker?
Breaking Down Barriers - A Casual Conversation with Roche
Переглядів 2466 місяців тому
Breaking Down Barriers - A Casual Conversation with Roche
HDYou Community Stories: Jozefine's Testing Story
Переглядів 1716 місяців тому
HDYou Community Stories: Jozefine's Testing Story
HDYO Research Video Series: Could halting CAG expansions be a new treatment for HD?
Переглядів 866 місяців тому
HDYO Research Video Series: Could halting CAG expansions be a new treatment for HD?
Vídeo de quadro branco falando sobre HD com crianças (versão em português)
Переглядів 466 місяців тому
Vídeo de quadro branco falando sobre HD com crianças (versão em português)
HDYO Breaking Down Barriers - Somatic Instability
Переглядів 2067 місяців тому
HDYO Breaking Down Barriers - Somatic Instability
Research Video Series - Youthful Competitors: Young Brain Cells Oust The Old
Переглядів 1107 місяців тому
Research Video Series - Youthful Competitors: Young Brain Cells Oust The Old
Research Video Series: Drug to treat movement symptoms of HD approved by FDA
Переглядів 918 місяців тому
Research Video Series: Drug to treat movement symptoms of HD approved by FDA
An Update from HDYO with Matt and Jenna
Переглядів 4418 місяців тому
An Update from HDYO with Matt and Jenna
Breaking Down Barriers: Stigmas Around Grief and Loss
Переглядів 1288 місяців тому
Breaking Down Barriers: Stigmas Around Grief and Loss

КОМЕНТАРІ

  • @paulanix7561
    @paulanix7561 2 дні тому

    Its the Diet!!! Check out these doctors on UA-cam: Dr. Ken Berry, Dr. Anthony Chaffee, Dr. Shawn Baker, Dr. ERic Berg, Dr. Darren Schmidt - all on youtube!!! Please keep open mind. Carnivore diet - eating only animal products - heals the nervous system and neurons in the brain. Our foods are destroying our health. We must get back to the foods that we were eating prior to 1900. We ate more fat, cream, butter, beef, bacon, eggs, - our bodies make cholesterol if we do not get enough. Seed oils are destroying our health. They did not exist prior to 1880. Do not eat packaged foods, only one ingredient foods. NO SUGAR. SKIP FRUITS UNTIL YOU ARE HEALED THEN SLOWLY BRING BACK. Fruits and vegetables were seasonal foods and fermented for preservation, not canned. God gives us things in the world for vitality. We must save ourselves and the next generations.

  • @user-zk1nr2jz5c
    @user-zk1nr2jz5c 5 днів тому

    so happy for you sweetie

  • @Sam-fp8zm
    @Sam-fp8zm 5 днів тому

    eat paleomedicina diet to be healthy

  • @sophiaduarte745
    @sophiaduarte745 13 днів тому

    Prayers for Us all.❤️🌎🙏📖💕

  • @fudiakamara8290
    @fudiakamara8290 14 днів тому

    Thank. God 🙏

  • @sineriafrankenstein7316
    @sineriafrankenstein7316 18 днів тому

    So happy for Kristin's test results!❤🎉❤

  • @Kree4Sai
    @Kree4Sai 21 день тому

    Thank you for your inspiring and informative talk. ❤️ 😍 💖

  • @user-cc5od3zk4p
    @user-cc5od3zk4p 28 днів тому

    My condolences to all. This makes me so sad. The strength and beauty of these kids is astounding. With all the stupid crap on this planet, think of these kids and how much they have contributed to humankind.

  • @joeysnyder7532
    @joeysnyder7532 Місяць тому

    One of my classmates from High School died of Huntington's Disease 2 years ago. Sad disease for anyone.

  • @sandrakelly7793
    @sandrakelly7793 Місяць тому

    My son in-law has it just devastating

  • @chaisecranston1021
    @chaisecranston1021 Місяць тому

    Such a great outcome. Beautiful story. Pain is still there for others. Feel blessed and continue the fight for a cure. It's a horrible experience and hurts everyday. #help4hd #curehd

  • @westley1004
    @westley1004 Місяць тому

    I'm so disappointed in anyone who marries a woman or man with Huntington's in this day and age and decides to have children. Absolutely stupid.

  • @bella2091
    @bella2091 Місяць тому

    My dad has the disease, its so hard because we don’t have any support from my dad’s family. My mom takes care of him and it’s super hard for her and it’s really hard to me watch this everyday and be a part of it. I’m so scared of me or my brother having it and I get angry at my parents for not being more thoughtful and not make the decision to have a child when the sickness runs in the family. I just hope to god that we don’t have it and I’ll be super careful when it comes to having a child.

  • @techeasy-wz2wd
    @techeasy-wz2wd Місяць тому

    This decision isn't difficult, if you are at risk with HD... DON'T HAVE CHILDREN... I have a child dying from this disease and you keep risking chldren. NOT HARD, STOOOOPPPPPPPPPPPPPP HAVING CHILDREN, then it ENDS.

  • @techeasy-wz2wd
    @techeasy-wz2wd Місяць тому

    I am so sorry....the hard truth is horrible.....my wife passed away from HD...she never informed me of the DISEASE HD. We have 2 children my son first my daughter second. My daughter Mariah has HD.....this is very hard for her and myself...so hear is the solution... if you are at risk dont have CHILDREN. the risk of 50/50 is not worth it when you watch your child go through this. VERY SIMPLE STOP HAVING CHILDREN.

  • @MB-zp5kp
    @MB-zp5kp Місяць тому

    Read the book about Ron Cox's family going through it....I can't remember the name of it. Amazing

  • @MB-zp5kp
    @MB-zp5kp Місяць тому

    Huntington's symptoms don't usually show up until later adulthood, mid- to late-30s, 40s, even 50s, usually after they've already become parents. Until recently, there was no other way to know but symptoms starting... and even then, it was often misdiagnosed. Now there's a genetic test. A lot of people who have children suffering now did not know they had the HD gene. The family I know that has it had no idea anyone in the family had it until they already had two children. The mom showed symptoms after that. They knew there was some kind of spasticity in a relative, but not that it was Huntington's and not that she had it. Her own parents hadn't shown it when she had children (I think one had been misdiagnosed & then died young). Severity and age of onset vary so widely... don't assume anyone knew. Until someone in the family is correctly diagnosed, no one has any idea they're at risk, and many have never even heard of it. I don't think my friends would ever have risked having children had they known. The juvenile form is not very common. HD is a repeated genetic sequence normally; having a lot of extra repeats is Huntington's. The more extra repeats a person has, the more severe the case and the younger the onset. So even in a family, everyone's can come on differently and at different ages. Please don't judge with assumptions.

  • @MARVINGAYE662
    @MARVINGAYE662 2 місяці тому

    You are a brave, smart, responsible, caring and honest young woman....

  • @mackaronie629
    @mackaronie629 2 місяці тому

    People with HD need to stop having kids bro, adopt them instead, so that you don’t pass on the genes. God bless every kid who has to consider their chances of living past 70, or takes a test to determine how short their lives will be.

  • @jeannettebrachthaeuser5914
    @jeannettebrachthaeuser5914 3 місяці тому

    Gracias por este aporte. Me siento completamente identificada en la situación de Javier. Cuide 12 años a mi esposo y no es facil encontrar información competente en diferentes idiomas fuera del ingles. Mucha fuerza y paciencia para todos los cuidadores. Con amor se puede todo ;) 😅

  • @Jarbeaufamily
    @Jarbeaufamily 3 місяці тому

    Families should not be having biological children 50% chance is still a high percentage our family suffers with JD we lost my great grandfather, grandfather I lost lost many many aunts and uncles.. my mother does not have it, so I chose to have a family of my own. We are in Canada Ontario

  • @Mareecrabtree
    @Mareecrabtree 3 місяці тому

    What a horrible disease ❤❤❤❤

  • @masmicas
    @masmicas 3 місяці тому

    Muito obrigado pela informação.

  • @williamparker1085
    @williamparker1085 3 місяці тому

    not sure how you could have kids knowing of the family history

  • @jeannemillsom9300
    @jeannemillsom9300 3 місяці тому

    This is a disease that could be wiped out in a generation if people got tested and if positive sterilised., it is a wicked disease that used to be known as "Huntington's Chorea". However people with this illness seem to have many children, which creates a burden on society.

  • @MrsPicklesIsHome
    @MrsPicklesIsHome 3 місяці тому

    I witnessed two siblings in their early 30's or so slowly dying in a nursing home with HD. They SUFFERED. They couldn't control their limbs and while they could still walk would have falls with injuries, they'd shake and jerk, twitch, had mental and emotional decline, memory loss... eventually inability to speak, hallucinations, and complete incontinence. Horrific. Their parents made this choice and these siblings surely died a horrible death at a young age. This disease SHOULD have disappeared long, long ago.

  • @philipjackson8733
    @philipjackson8733 4 місяці тому

    Im 45 and have Huntingtons. I never had biological kids but have loved my two step kids as my own. I love them so much and have never regretted any decision about having kids. The first time my kids met my mother she was bedridden and if you know, you know. Im thankful to god for these two blessings in my life. Im greatful for everyday.

  • @clairebarrett301
    @clairebarrett301 4 місяці тому

    because they suspected he was drunk. He had a bad turn ended up in social care home and died within 24 hrs. Fast track me and my husband were married a few years.... when this happened and we have a daughter who I pray does not have the gene... and I worry for my husband... how do I pay the mortgage and provide.. I'm gutted for him.. what will happen because he had the gene.... and the realistic outcome is I will be a widower in my late 50s trying to provide for my daughter and working 24/7 to provide without my companion ... I helped care for my father In law and it destroyed me... and it will feel even more devasting when my husband suffers and my daughter has to watch this decline... and I am sad the day she understands the disease and decides whether she will tested... I feel happy to have them in my lives but worry and have anxiety over the what ifs...

  • @mrmoogals3170
    @mrmoogals3170 4 місяці тому

    Why do they' have children knowing its generational. Also do the girls have it .

  • @Reda-sl8hx
    @Reda-sl8hx 4 місяці тому

    Selfish to have kids 😔

  • @user-dy9ux8sf7i
    @user-dy9ux8sf7i 4 місяці тому

    Kristen, You are just a astounding young Lady.God bless Youin all You do in Your life, and thank The Lord ! The video was just incredible.

  • @lisadunphy41
    @lisadunphy41 5 місяців тому

    Sisters ? Why do they have different accents ?

  • @kandiceblu1
    @kandiceblu1 5 місяців тому

    I don’t know why he wants so many languages it’s I think 90% in English-speaking people and it’s almost 100% European descent not Africa not Finland China or Japan so he doesn’t have to worry about those languages

  • @elapaszczynski495
    @elapaszczynski495 5 місяців тому

    Is there any surgery to stop shakes at least? Good bless the whole family !

  • @geztinsdale
    @geztinsdale 5 місяців тому

    thank you for sharing this, brings back those feelings I had when I received my results 21 years ago which still feels like yesterday. My emotions that day identical to yours and I just wish everyone else going forward gets the same negative result x

  • @eliose.w
    @eliose.w 5 місяців тому

    rip 🕊️

    • @Matt-kr5ib
      @Matt-kr5ib 5 місяців тому

      Wdym rip?

    • @eliose.w
      @eliose.w 4 місяці тому

      @@Matt-kr5ib he passed away in a boat accident

    • @halt964
      @halt964 4 місяці тому

      ​@@eliose.w No way..

  • @shannajensen5030
    @shannajensen5030 5 місяців тому

    I think I reacted happier for her when they said her result than her husband did.

  • @chrisssanders1231
    @chrisssanders1231 5 місяців тому

    HD is NOT just a disease of middle age. ua-cam.com/video/Sb6YjAfB1H0/v-deo.html

  • @jeannebrooks6003
    @jeannebrooks6003 5 місяців тому

    So inspirational! As a health care provider (ret.) this documentary should be mandatory viewing for medical students!

  • @ayesh5544
    @ayesh5544 5 місяців тому

    Good news!

  • @rosemaryhoydocumentaries
    @rosemaryhoydocumentaries 5 місяців тому

    It is not selfishness.

  • @rosemaryhoydocumentaries
    @rosemaryhoydocumentaries 5 місяців тому

    Most people with Huntington’s disease can be stubbornly in denial..it is the disease not the responsibility, it is part of the problem. I was an RN and I cared for several people with it.

  • @marilynbarker8255
    @marilynbarker8255 5 місяців тому

    Seems like the counselors that conduct the procedure could use some “counseling” to improve how they handle these young people. Some very insensitive handling of giving people the results.

  • @marilynbarker8255
    @marilynbarker8255 5 місяців тому

    What a wonderful man… maybe soon a breakthrough in curbing symptoms and progression. 🙏🏻🙏🏻🙏🏻🙏🏻

  • @hojo70
    @hojo70 5 місяців тому

    This disease is not that uncommon, I lost a good friend to it

    • @susansmith493
      @susansmith493 4 місяці тому

      It's 004% of the US population.

  • @tracymcgrath1192
    @tracymcgrath1192 6 місяців тому

    Rip ❤🙏🌹

  • @marilynbarker8255
    @marilynbarker8255 6 місяців тому

    So interesting. Perplexing that the chances are 50/50 and yet so many positives with the embryos, and with people in general during testing. Congratulations on the twins… and for having the courage to stay on the path.

    • @coraldell3091
      @coraldell3091 2 місяці тому

      ❤ it's great hear that you have found it interesting , thankyou for your comments.

  • @cwozzzz
    @cwozzzz 6 місяців тому

    just seeing this & did a search for her brother, to find out her dad died of terminal brain cancer a couple years after this documentary 😢 😢😢

  • @katytaylor681
    @katytaylor681 6 місяців тому

    Is there any update about Michelle and her work?

  • @marilynbarker8255
    @marilynbarker8255 6 місяців тому

    Please stopped the background music!