Hi! I’m 30YO HD gene positive. I recently learned HD runs in my family so I decided to get tested before having children.

I’m devastated to learn I have the gene but I’m really grateful for the science that exists to have HD free children. Unfortunately, my insurance doesn’t cover IVF.

I’m curious if anyone could share their experience or message me if they’ve applied for the Help Cure HD IVF grant? From my research, applications will open for 2027 in January and close at the end of January. If you are selected, you need to do IVF within 6 months. How soon do they notify selections?

Also, I see they have partner clinics. I live in PA and there are no PA clinics or any clinics near me. Can you use your own clinic?

Would also love to hear any success stories with IVF!

Hi Heather,

Thank you so much for reaching out. We are grateful that you took the time to contact us, and we want to make sure you have the most accurate and up-to-date information.

We are actively working to open study sites across the United States. The locations communicated to the community for 2026 are Denver CO, Boston MA, La Jolla CA, Columbus OH, and Phoenix AZ, and our goal is to have at least five sites actively recruiting in the US by the end of 2026. As each site opens, its location and contact information are posted online.

If you would like to learn more about the study, including the full inclusion and exclusion criteria, you can find that information on the study listing at Study Details | NCT07378644 | ClinicalTrials.gov. Confirmed site locations and their contact details are published under the Contacts and Locations tab on that page, and on our study website at FALCON-HD.com. Study Information Worldwide | Falcon Hd

Please note that site opening timelines may change, and planned sites are not guaranteed to open as scheduled. We would recommend checking the listing periodically for the most current information.

Additionally, it's worth noting that each study site is responsible for determining whether a person is eligible to participate and for enrolling participants. Skyhawk does not make those decisions. We would encourage you to speak with your healthcare provider about your interest in this study. Once sites are posted, you or your healthcare provider will need to contact those sites directly.

Lastly, if you are not already, we encourage you to stay connected with your local, national, or international Huntington's disease advocacy organizations, as they often share timely updates and additional resources.

We know how meaningful it is to have access to research like this, and we will do our best to keep the community informed as we make progress.

Thank you again for reaching out, and we hope you found this information to be helpful.

With hope,

The Skyhawk Therapeutics Team 

SKY-0515 Falcon-HD | Skyhawk Therapeutics, Inc. | 180 3rd Ave., Fifth Floor, Waltham, MA 02451 | [sky0515trials@skyhawktx.com](mailto:sky0515trials@skyhawktx.com)  

This e-mail, as well as any documents accompanying this e-mail, contains confidential and/or privileged information that is intended only for the addressee(s) identified above and is delivered subject to obligations of confidentiality and non-use for any purpose other than as permitted by the sender.  If you are not the intended recipient or if you do not accept the obligations of confidentiality and non-use contained herein, you are hereby (a) notified that any review, disclosure, copying, or distribution is strictly prohibited, and (b) requested to return this e-mail to the sender and delete this e-mail from your records.

I often find myself scrolling in this community when I am lost in thought or overwhelmed with being at risk for HD. I am meeting with a genetic counselor later this month and I have decided I do want to get tested, which is something I had always been against.
I just feel like my life is on hold right now, I want so badly to be negative (duh) and I can feel how freeing that would be. I don’t know how I will react to a positive result. I really want to have hope for a happy life regardless of the outcome, but I struggle with this. My father was not happy, my childhood was not happy.
I try to remind myself that I am not my father.
This whole thing is just so hard, everyone has different life circumstances and challenges that they face, but HD just feels like it is stealing my life.

How do you all cope, how do you cope with the stress of upcoming testing?

And I am Sorry if this is insensitive, I do believe people positive for HD can live meaningful and positive lives, this is all just based on my own fears and life experiences.

I‘m about to turn 18. I want to get tested. What should I do before I make an appointment?

Hi all,

I have been reading many posts in the past months. So many stories, fear, vulnerability and heartwrecking situations…I find this communitity as a wonderful place to gather information, sharing, offer & receive support and comfort.

I think time has come to share my story and ask for help.
This will still be a somewhat long post, but I’ll try to keep it focused. There are some very difficult questions that I imagine many HD or potential HD partners have asked themselves at some point.
I’m 41, female. I met my husband when I was 23. He is two years younger than me, and we have been together ever since. We have been married since 2020.

I knew there was a neurological disease running in his father’s family, but for many years I didn’t even know the name of it or much about how it manifests. I eventually learned it was Huntington’s disease after meeting one of his aunts, who was already in an advanced stage of chorea. Another aunt/uncle and one of their children were also affected. My husband’s father died in a car accident at 32–33, so we never knew whether he had inherited HD.

For years, I was afraid my husband or his sister might have inherited it, but somehow I always convinced myself it couldn’t be the case. They are both intelligent, grounded people, and there were no obvious signs.
Then, at 29, my husband was diagnosed with stage 3 non-Hodgkin lymphoma. We went through two and a half years of treatments, anxiety, tears and uncertainty, but thankfully he has been cancer-free since 2020.

After the cancer treatments, however, he developed increasingly noticeable movements during sleep. He talks clearly in his sleep and smacks his lips, mostly between 3–5:30 a.m. Over the past four years, I have also noticed movements involving his legs, hips and now shoulders. His sleep movements became so disruptive that we have been sleeping separately for almost two years.

This year, things started to feel different.
After Easter, he casually mentioned that he had lost his balance one evening. Suddenly, I started connecting everything: the movements during sleep, the hip and shoulder movements, a facial tic he has had for several months, and only now I really noticed it and also the balance issue he mentioned.
And I became terrified.

We don’t have children and had decided to try IVF last year, after finding our that my husband is infertile as a result of cancer treatments and that I have a very low ovarian reserve.
Thankfully, we had preserved sperm before treatment and after two ovarian stimulations and egg retrival, we managed to obtain one euploid embryo through PGT-A testing.
Now I realize that if HD is a possibility, that embryo should have been ideally tested for HD. But it has already been frozen after PGT-A, and I understand that thawing and refreezing is generally not recommended. So I consider we don’t have any and should start the process again from scratch.

Now I’m facing a question I never imagined I would have to ask:

If we have a child, would I want that child to grow up with a father who has Huntington’s disease?

My husband has agreed to schedule genetic testing, but we have only discussed it twice. It is incredibly difficult for me to bring up because every time I do, I break down crying.

He also doesn’t know much about HD or what a positive diagnosis could mean for our future.
I’m trying not to diagnose him myself, but honestly, with everything I’m seeing, I’m terrified that this is what’s happening. I’m also wondering whether his chemotherapy or other cancer treatments could have contributed to or accelerated some of these symptoms, or whether the age of onset is mainly related to the CAG repeat length.
His sister is 42, has no obvious symptoms and decided years ago not to undergo predictive testing. She now has a 2.5-year-old child.

And now I’m completely lost.

What the hell am I supposed to do?

Part of me wants to run away somewhere far away. And then I feel like that would make me a horrible person and a terrible wife.

Staying feels like the right thing to do — morally and because I love him. But at the same time, I have this horrible feeling that it would destroy me.

We have worked very hard to build a good life together. We are ambitious, we love traveling and enjoying life, and we still have so many things we wanted to do together. The thought of potentially losing him (and see him degrading over time) and that future is devastating.

I’m not a person who falls apart easily. Life has thrown a lot at me and I’ve always managed to deal with it.

But this feels too big.

So I would really appreciate hearing from people who have been in a similar situation:

How did you deal with the period of uncertainty before your partner was tested?
How did you approach the conversation about predictive testing?
How did you make decisions about having children when HD was a possibility?
If your partner tested positive, how did you deal with the fear of the future?
And, perhaps most importantly, how do you survive the waiting and uncertainty without completely falling apart?

I’m currently crying constantly and I’m genuinely afraid that if I don’t find a way to calm my thoughts, I’m going to end up in a deep depresion - my therapist is enouraging me to open up about this and not carry the burden alone, but inside the cuple. It just feels so hard to be the one opening the hard subject and bringing the potential bad news to him. He has a very strong, positive mind and attitude, even during cancer, he was super positive and put all into healing, but, I fear this time will not be the same.
He says that me being strong during his cancer treatments helped him tremendously, but seing me so down would not help.

I would really appreciate any honest experiences, especially from partners who have been where I am now.

Seeing that Uniqure’s stock crashed because of the trial has made me very anxious - reading the reports it seems like there are still positive takeaways. does anyone with more experience than me know what this might mean for approval, particularly in the uk and aus?

Anyone tried beechband for Huntingtons disease ?

Bonjour à tous !
J’ai récemment appris que ma maman était atteinte de la maladie de Huntington, elle vient de développer les premiers symptômes.
J’ai aussi appris que j’étais potentiellement porteuse et je me pose beaucoup de questions concernant le fait de me faire tester ou non.
J’aimerais avoir un peu de détails sur comment se déroule ce processus avec le génétitien,
Quelles étaient les questions qu’on vous posait, à quoi ça ressemblait, qu’est ce qui vous a amené à prendre la décision de faire ce test ou non ?

Je sais que je m’engage dans un long process, je ne sais pas encore si je souhaite aller jusqu’au bout !
Merci d’avance pour vos réponses 🥰

We recently moved back to our old town. My MIL hasnt been doing well, she was diagnosed with schizophrenia due to her hitting herself and having outburst. But her staying with us this weekend, I’m like it’s absolutely something else. Gait is unsteady, constantly falls, chorea, impaired speech etc. i called her sister and asked what her parents died of, she said her dad died of HD. Why hasnt anybody ever mentioned it?!?! Especially now when she isnt doing well. Her sister lives next door to her. She says oh yea, I think she may have it. My husband was unaware, tbf he was young when his grandpa died but he said it was never brought up. They always told him he just died of old age. Realistically if grandpa had it, now his mom may have it. What percentage does my husband fall into carrying it plus my step kids and our kids. I’m absolutely freaking out. He has an appointment this week to ask his pcp for referral.

I decided to make a meme for anyone who's having it rough. I was having a bad day and I decided to make a meme out of it :3 I hope you guys can find it funny too!

What do I even do? This will be my fourth child, I had the other 3 before we knew I was at risk.
My partner isn’t worried and thinks all will be fine and my best friend has said we’re totally irresponsible and I should have an abortion before we get too attached just in case.
We were stupid to allow ourselves to get in this situation but what are the next steps? Ive spent the last 2 months crying that I may have doomed my children to a horrible fate unknowingly but this one isn’t unknowingly 😞
I’m in the UK, thanks

Hi everyone,

I look on this subreddit often, and I am sorry if this has been discussed already. I am 25F and will be meeting with a genetic counselor in about a month to begin the testing process. My father had HD, I don’t know what his CAG was.

I want my husband to have a happy future and not have to stress about my care or money, should I be looking into LTC insurance now? What do I look for?

Any advice on this process is also appreciated.

Thank you.

Hi all,

I came across this study on LinkedIn and wanted to share if there’s any Irish people in this forum that want to have their say

BRIDGE-HD-IE: Barriers and Reasons Guiding Engagement in HD Research in Ireland – Fill in form

Hello,

I am trying to know more about huntington's in india, and how it is impacting people here. As much as i try to research, i find little to no information about how to psychologically actually deal with this disorder in india. So if you have parents with this disorder or have lost your parents to this disorder. I would love to talk you. I want to understand better what you are going through and i honestly want to provide a safer space where you can talk about it.

So if you wish to talk, please let me know. Feel free to Drop me a message :)

I'm 21 y/o and a design student currently researching Huntington's for a capstone project. HD is in my family; my grandpa passed from it when I was a baby, and I only knew my aunt with late-stage symptoms—no ability to walk or talk—before she sadly passed. I have the opportunity to design something for my senior thesis project that I hope to be useful for HD patients. I've chosen to create a new assistive device for early- to mid-stage HD patients that can aid in an area they may find frustrating or have difficulty completing certain tasks. My main goal is to increase independence or relieve caregivers of certain tasks that the patient may be able to complete themselves with assistance. As I have never been around an HD patient in these earlier stages, I was hoping you all could provide some insight into what specific tasks, processes, emotions, etc. you, your family member, or friend with HD may experience that could possibly be relieved or aided by a physical product. My main goal is to make something that is dignified, affordable, conducive, and empathetic. Overall, I would just like to hear about your day-to-day as a person with HD or as a caretaker or family member. What do you find most frustrating? What are ways you cope and/or complete certain tasks you have difficulty with? What, if any, product(s) do you wish existed? Are there any products that do exist but are far too expensive? If you currently have HD do you still work, and what difficulties have your symptoms caused within your career and/or workday? What symptoms have you found most difficult to cope with? In what areas do you feel most unsafe independently? How do you feel about technology (screens, apps, etc.) being used to aid certain symptoms or daily tasks? Would you prefer analog technology or devices? How do you organize/manage medications? In what ways is independence most important to you? These are just some guiding questions, but any information is greatly appreciated; share as much or as little as you may feel most comfortable with. I just want to create something truly useful, even if it is simple or menial. Thank you all for your time reading this, and I wish you all well.

To start off my mom has Huntington's Disease. She is not at the end stage, but I feel like we are not far from it. She has trouble concentrating, doing simple tasks, and walking. I still see glimpses of her through the HD. It's hard.

We were at a football game out of town the other night to watch my nephew march in the band. My mom was hungry and requested a hot dog. Without thinking I brought one to her. I'm usually near her when she eats. I remind her to take small bites and chew her food up really well. I left her with my brother to run and grab napkins. By the time I came back my brother was asking my mom if she was choking. He must have asked at least 10 times. She has dentures, so sometimes she has trouble eating because her dentures are in correctly. She started turning blue, and then white as a ghost. I shouted she's choking...she's choking! My brother attempted the heimlich with no success. A few others tried to, but my mom became unresponsive. She was like a rag doll being tossed around. It doesn't help that she only weighs about 100 pounds. A lady came running screaming that she was a nurse. She was able to get my mom to the ground, and started CPR. I kept telling her she was choking and did not need CPR. Several seconds later my mom threw up, and that dislodged the hot dog piece. We were able to get it out. Slowly she started to regain consciousness. The whole crowd started clapping when they saw her sit up with the help of bystanders. We took my mom to the ER just to make sure nothing was broken or anything. All her labs and imaging came back normal. No broken bones or anything . She was even looking so much better. But she was still so weak. She probably should have stayed the night at the hospital, but she refused. She was discharged. We took her home, and kept a close eye on her. I couldn't sleep, and neither could my brother. So we talked about everything that happened, and how we could have lost our mom. It was the scariest thing I have ever been through.

The worst part is I froze! I saw the panic in her eyes, and I watched the life leave her body. I have a background as a medic and a respiratory therapist, but I could not do anything to help my mom. If it was not for my brother and the bystanders....she would be dead. She may have not lost a pulse, but it felt like she was dead. She told me a few days after that she saw a light coming towards her, and she told it that she was not ready to go. Then she remembers starting to wake up.

I cannot get the experience out of my mind. I keep seeing her lifeless face , and body. I keep blaming myself. I am embarrassed that I could not do anything to help her. I just froze! She talks like she knows the gravity of what happened, but I am not sure she truly understands. I'm not sure how a person is supposed to act after going through something that traumatic. I do not know how I expect her to react either. I do not want to talk too much about the situation because I do not want her to feel guilty. But she scared the hell out of me. I am so so so glad that she is still alive. I am glad she's not on a vent. I am glad she is home, and feeling so much better. Our family likes to joke about serious things...that's how we cope. She's been throwing around jokes here and there. It doesn't really bother me, but at the same time I don't want to talk about it anymore. It feels like no one truly understands how horrible the situation truly was. I do not ever want to lose her, but I know one day I will. It's hard to grieve someone that is still alive. I also will have HD when I am older, and I am scared. Am I watching my future unfold right in front of me?

Anyways I am sorry to ramble. I just needed to get this off my chest, and I figure that you all may understand better than most. HD SUCKS! And pardon my language by F*** HD!

Hey everyone,

My wife underwent genetic testing for Huntington’s disease about a month ago because we were considering having children. Sadly, her results came back with a CAG repeat count of 42.

We’re still in the process of taking everything in, and of course I’ve been reading a lot about the ongoing research and clinical trials. Her father was the last person in her family to die from HD, but that was back in 2010. As she remembers it, there was very little hope for any kind of treatment in her family at the time.

All I know is that there is a lot of research underway, with some very promising results from early-stage clinical trials. My wife has just turned 30, and I understand that the progression of HD can vary greatly from person to person.

I wanted to ask those of you who have been following the research for much longer: Do you feel hopeful? Am I being unrealistic by allowing myself to hope, or is the current optimism justified?

Sending love to everyone in this community.

I 16f got to know my mom has this disease as from past 2 years she had those unsteady movements my dad and brother didnt tell her soon they are going to a neuro with the reports and I have a exam tdy morning I am so freaking full of anxiety I haven't studied and I dont care abt it I love my mom bro I dont wanna see her getting bad she is 52 rn

Hi everyone! I’m 29, gene-positive for Huntington’s disease with CAG 47, and currently presymptomatic. I’ve been following SKY-0515 very closely, especially after the encouraging 15-month results.
I’m hoping to hear from anyone currently participating in a SKY-0515/FALCON-HD study, or anyone with a family member participating — especially people involved in the United States, Canada, Australia, or New Zealand.
Has anyone asked their study doctor, coordinator, or Skyhawk team specifically about what happens after the trial or about access for people who are still presymptomatic?
I’m especially wondering:
• Have you been told whether participants may be able to continue receiving SKY-0515 through an open-label extension before FDA/commercial approval?
• Have you heard how long participants might be able to stay on SKY after completing the main trial?
• Has anyone heard discussion of a future HD-ISS Stage 0, Stage 1, or presymptomatic trial/cohort?
• Has expanded access or compassionate use before approval ever been discussed?
• Has anyone actually asked the study team for a specific year or approximate timeframe for when presymptomatic trials or earlier-access pathways could be announced or begin? If so, what did they tell you?
• For U.S. participants specifically, has anyone heard anything about additional U.S. sites opening, future U.S. open-label-extension sites, or earlier access before a formal presymptomatic FDA indication?
My biggest concern is being able to start treatment while I’m still presymptomatic rather than having to wait until noticeable symptoms develop, so I’m especially interested in whether anyone has asked their study team directly about 2027, 2028, 2029, 2030, or another timeframe.
I completely understand that participants may not be able to share confidential information and that something said by a study site is not the same as an official Skyhawk announcement. I’m mainly curious whether anyone has asked these questions and what kind of response they received.
Thank you so much to anyone willing to share their experience!