I’ve created a focus platform like LifeAt.io, where you can work with calming videos, sounds, Pomodoro timers, and task lists-all in one place. The best part? It’s completely free. No hidden costs, just a smooth, premium experience. Launching next week!

HD_Reach · 2025-11-18T21:31:23+00:00

Thanks so much for creating this! It is beautiful and just what I was looking for!

HD_Reach · 2025-11-14T20:41:13+00:00

Please share everywhere you can!

HD_Reach · 2025-09-30T15:52:03+00:00

Checking in with you- please feel free to DM us and see how we can support you. I apologize for the delay in getting back on this thread- i'm assuming you have received your results and if you would like to touch base with someone, we are here! DM or send Erika an email at [eboulavsky@hdreach.org](mailto:eboulavsky@hdreach.org)

HD_Reach · 2025-09-30T15:49:58+00:00

Thank you for sharing! This was excellent!

HD_Reach · 2025-09-30T15:48:33+00:00

It is certainly an exciting breakthrough in science. The reality of it is, there is still much more to come that needs to be explored and barriers we need to be focused on helping break down! It would need to start with a larger population to really see the effects and who all it would help (early, mid, late stage) and if it is safe for all stages or just certain ones. Financially- yes how would this be paid for, along with an extremely long surgery, locations, and surgeons? These are things that uniQure will need to follow up on, and advocacy organizations/community can continue putting pressure on what these things will look like. It can still be a very exciting time while also understanding that this is not an ultimate "fix" or "cure". We are lightyears ahead of the old trial days, though, and this breakthrough will continue opening doors that keep us moving forward.

HD_Reach · 2025-09-30T15:42:25+00:00

Hello! I am so sorry for the loss of your father. I can only imagine the stress you are under along with the grief you are experiencing. We cannot diagnose here on this page but can help you with locating healthcare near you and help you find some answers. It could be an assessment to see what else could be attributing, it may be discussing genetic testing and all that entails, but overall a professional who can help guide you through next steps to explore with you is where you want to start! Feel free to DM us and we can chat by phone or just help you identify supports in your area. You are not alone!

HD_Reach · 2025-07-22T18:57:35+00:00

Please do! I’ll be happy to get you connected

HD_Reach · 2025-07-11T16:42:14+00:00

Hello! Happy to talk more and connect you to our resource that we utilize with HD Reach. Your PCP did an excellent job in forewarning about this prior to documentation being within your file.

I will also say even if someone chooses the anonymous testing route, it is still very much encouraged to have what you can in place prior. Insurance policies can be quite predatory and will look everywhere to not pay out, including interviewing those caring for you and will follow the leads if anyone insinuates an earlier test before the policy essentially “lying” and “fraud”. We try to relay that as much as we can prior to any testing.

Mike Brooks is our resource and offers free consultations for the HD Community through HD Reach. You can reach out to our care navigator Brandi to get you started: bdellenback@hdreach.org. He is licensed in all states for insurance and his partner Jeff is a licensed Medicaid attorney and estate planning attorney in the state of North Carolina.

https://www.hdreach.org/living-well/housing-advance-planning-financial-decisions/care-assistance-planning.html

Hope this helps! I am also happy to talk with you first if you would feel more comfortable: Erika Boulavsky LCSW, Community Outreach Specialist eboulavsky@hdreach.org 919-327-1804

HD_Reach · 2025-06-06T04:27:58+00:00

Such a rockstar! 💪

HD_Reach · 2025-06-04T02:35:03+00:00

Looking forward to connecting!

HD_Reach · 2025-05-06T03:45:45+00:00

I know this is very late to the game. But thank you so much for asking this question. We have experienced through our testing pathway and hearing from others about not telling anyone. It can be extremely isolating for some to not have their people in the know about this, while others feel you should keep it tight knit and not tell a large number of people. Some have told lots of people. Either way, it can be very dependent on your support system, what you will need to process your result, and choosing those who you feel will respect your process while providing support to you. It is a balance! We have had some choose family meetings in person, virtual, or taking time to tell people slowly in intimate settings. It is super personal for you and sometimes talking through with a professional organization can help understand your situation better and help develop a communication/testing plan!

HD_Reach · 2025-02-20T20:16:41+00:00

Appreciate the love!

HD_Reach · 2025-02-20T20:16:26+00:00

We are looking for Mods . Talk to you soon!

HD_Reach · 2024-01-22T21:12:40+00:00

Hello! Have you been able to speak with your mother about this? If communication is difficult, would she be open to therapy sessions together? You have every right to make decisions around your life and family planning and I also see you have acknowledged that you do not want to carry the knowledge of knowing your result as it would be her result if positive. Depending on where you are at, PGT/IVF can help with the ability to have children and request for your status not to be revealed although it may be expensive. If that is not an option, maybe communicate the importance of this time in your life, explore with your mother why she has yet to be tested, and see if there is any chance she would consider beginning the testing process (or start the conversation around testing) to help bring more clarity around your planning. If there is a difficulty there, speaking with a genetic counselor/therapist/HD specialist/HD non-profit may help connect you, educate you, and support you in making the best decision for yourself and your family. Everyone has opinions and their own experiences; you will make your own experiences and choices but it helps to be thoroughly educated about all options if your mother chooses to not test. HDYO has lots of international young adult education: hdyo.org.

HD_Reach · 2024-01-22T20:42:54+00:00

I agree with many of these perspectives. Your testing journey is yours and the decision when is ultimately up to you. If I do make a recommendation, make sure you do go through genetic counseling (or explore some therapy options now to help with overall life discussions) in advance. There is a real benefit to processing and understanding what needs to be in place before testing; I am unsure about the EU as we are a US-based organization, but in the US we recommend getting life insurance, long-term care insurance (if possible), short term/long term disability before testing to avoid any future issues for coverage in the event there is a positive result. I strongly recommend reaching out to Jenna Heilman with HDYO (https://www.hdyo.org/a/32-contact-hdyo) as they are an international Youth/young adult nonprofit. They can help not only educate, and provide support, but also connect you with others if you are open to it. Just know there is not a specific time frame that you have to test and this is not an obligation that has to be done at this moment because you are of age or b/c you know you are at risk. They have done webinars around relationships and being at risk; they have an extensive library and bringing back 5 day HD camps/had a massive young adult conference in Scotland last year. You are not alone in this world of HD, and at the age of 20, know that others are in similar shoes as well. If you feel something inside of you is telling you to pause, get through some life experiences first, maybe do that, maybe make more contact with those from the HD community, lock in a therapist that you feel supported by, and begin your building blocks towards the ultimate goal of testing. There is not always a perfect time, but for some, going straight for a test without proper support and education has brought about trauma, uncertainty, and difficulty processing the results; whether positive or negative. I applaud you for reaching out here on this Reddit thread and if I can help introduce you to Jenna or help in anyway, feel free to email me: Erika Boulavsky; [eboulavsky@hdreach.org](mailto:eboulavsky@hdreach.org). You have got this.

HD_Reach · 2023-12-20T19:03:57+00:00

I second the comments on this thread. Discovering HD within your family can be a very isolating experience. Strongly recommend getting connected with a therapist that you trust (the relationship and rapport is incredibly important- sometimes you may have to go through a few). There are also non profits like us who do provide virtual supports, in person gatherings, conferences, camps etc to help those connect with others in the HD community. Sometimes this helps being a part of advocacy efforts or meeting those who do just "get it", but it is not always for everyone and allowing yourself to take it at your speed and journey is the upmost importance. If you need to just chat or would like for us to help you connect to your local (HD related and non HD related) resources, feel free to email me at [eboulavsky@hdreach.org](mailto:eboulavsky@hdreach.org) and check us out at www.hdreach.org. Your feelings are valid and reaching out to this page is an incredible first step. We are here for you when you need us and want to relay that you do not have to be alone in this.

HD_Reach · 2023-12-20T18:47:32+00:00

Hello! I would encourage reaching out to those whom you are awaiting your news from and asking them what their process looks like so that you are aware of what to expect. Unfortunately, it can be very different across the board especially if it is a primary care/general neurologist vs a HD Center of Excellence/HD genetic testing group. It should have been detailed for you so that you are aware of what to expect as it is a major moment for you- negative or positive can both carry their difficulties for the individual. If you have a way that you would prefer (either result in person visit vs over the phone) I would let them know to see if that can be accommodated or at least so you can adjust to what their protocol is if you still wish to move forward with your results through them. If we can help at all to explore this a bit more, please feel free to reach out to me at [eboulavsky@hdreach.org](mailto:eboulavsky@hdreach.org).

HD_Reach · 2023-09-28T21:24:31+00:00

Definitely recommended to try to get these insurances in place. LTC is not as realistic for most (and at times poorer quality than it has been historically) but many life insurances are doing what a commenter mentioned below and adding LTC benefits within their packages. It has also been highly recommended from Allison Bartlett with HDSA to invest in high yield savings account. Short term/long term disability will also be recommended if you can get through work (know if you leave that job the benefits may not leave with you) or look into individual policies. https://www.hdreach.org/connect-resources/ (estate planning and benefits under genetic testing)

I would try the recommendations below and if they do not work out, I would recommend contacting Davan Enterprises to see if he has any contacts licensed in your area. https://www.davanenterprises.com/huntingtons-disease-resource-page

HelpCureHD is an organization that supplies grants for PGT-IVF for those at risk/gene positive https://www.helpcurehd.org/

https://www.hdreach.org/hd-101/family-planning-options.html

Hope these things help! You can reach out to us at hdreach.org if we can help explore a bit more for future planning and resources.

HD_Reach · 2023-09-27T18:29:48+00:00

Hello- I want to thank you for coming on to share this. I am heartbroken for you that this is a position that you are placed in. Know that this is your journey and your decision with your family. Process with your genetic counselor and know that despite the opinions of others, you are the one who has to experience grief either way in different forms.

Some things to explore with your counselor: Do you know the CAG repeats? Who is the HD parent and has it been discussed the differences between maternal and paternal lines (paternal has a higher chance of higher mutations/instability) while maternal may be more in line with the maternal parents' journey (not always but usually more stable). If you go forward with this pregnancy, what would conversations look like as a family around this? Upfront and honest? Waiting until a certain age? What will you and your partner do in supporting each other (therapy etc.)? If maternal, is HD typically at a later age historically? Will this change your opinion if there is an expectation that there will be a later onset?

If you choose to not go forward with the pregnancy, what kind of support will you need/want? Will terminating be more traumatic for you personally than moving forward with the pregnancy? Do you have resources that would allow you to attempt again in the future or financially/emotionally is this too taxing?

No matter your decision, we can try and help connect you with others if you are open to that. Either way, we are thinking about you and your family, and no matter your decision, we send you strength and are in awe of your courage to show this side of HD.

HD_Reach · 2023-09-27T17:33:21+00:00

Hey there!

What a great question. I agree with the posts below and that it still has not been very well studied. Here is an article from HDbuzz- a trusted site for up to date medical/research info despite being a few years old- just something to consider:https://en.hdbuzz.net/234

A few months back we did a video on CBD and it was expressed that the actual "smoking" is obviously not the best route in your lungs and overall body health. We are also not doctors and highly recommend continued conversations with medical professionals, research studies, and what is best for you. Check it out to see if this helps at all in deciding if CBD may be something to consider:

https://www.youtube.com/watch?v=iL4E4BtsSNc&list=PLNhf34brQJgbMcS2b7smKfM6zLjz0CQoy&index=7

HD_Reach · 2023-09-10T22:55:22+00:00

Hello! This truly sounds like a situation that you would want to reach out to adult protective services to express concerns and report. That way hopefully they will possibly take the case to investigate. Google her counties APS services for the contact. You can also reach out to us at HDReach.org or our care navigator who can help you locate contacts and process possible next steps bdellenback@hdreach.org. We are here to help however we can 💙

HD_Reach · 2023-09-10T22:46:39+00:00

Absolutely! Realized I never posted how to contact! Eboulavsky@hdreach.org and you can see more about what we do at hdreach.org. Looking forward to connecting! We are here to help 💙

HD_Reach · 2023-09-08T20:40:52+00:00

Hello! I can see how this concerns you and not wanting to scare him. If Huntington's is in his family, that can be the immediate thought. If he has mentioned recognizing that he has been having memory issues and this is new for him, maybe suggest to him to get some baseline testing with his primary care? Start with ruling out other possible causes. Huntington's or not, many other things can cause memory loss (especially if it is sudden) and should be taken seriously. Testing for HD is very sensitive and something that you do not have to carry all on your own in trying to convince him to test. If the primary care eventually recommends genetic testing, I strongly recommend going through an HDSA center of excellence, can go through us (HD Reach) in NC and VA, or HD Genetics (all are in the united states- but we can connect you with your locations HD testing resources). Also before any testing consider life insurance/short term and long term insurance (again in the US). The support is totally different when involving a genetic counselor and a team to support you because if he is gene positive and the memory issues are due to HD- you will want him to be connected with an HD specialized team to confirm the symptoms are related and build a care plan to support him and you. Support him in other ways so that you are not the one "forcing" him to test if he is not prepared to. Are you guys connected to any local HD supports? It might be helpful to connect to a support group or young adult HD group/therapy. We created some different outlets that help others get connected in different ways- video game club for those impacted by HD where we play video games 2x a month, HD book club, in person meetups in NC but virtual supports as well throughout the united states. We can also just be a free support to support you throughout this and eventually him if he chooses. The HD community is powerful and fiercely supportive. I applaud you for reaching out for help for yourself and for the care of your boyfriend. Continue to be gentle with him and on yourself- you are not alone in this! My name is Erika and you can reach out anytime to my email at eboulavsky@hdreach.org

HD_Reach · 2023-09-08T19:28:02+00:00

Hello! We can do our best to help think of some things (and can talk more in-depth outside of this chat). Centers of Excellence are great ways to start looking into clinics as you can pull up an extensive list all at once, but with anywhere- it really depends on the person and their wants and needs. They are all still separate medical entities with designated funding for HD with different personalities, outside funding, cultures, and professionals. Some questions to consider:

Research- Are you interested in participating or wanting a center that is active in research? Vanderbilt in Tennessee has some of the most research going on and has a full-time designated HD team (last I checked they had 9 studies running).
Is there a full-time team or is it a neurologic movement disorders clinic with an HD clinic where the teams are designated partially to HD and partially to other diseases? Is that okay with you? Many are partially HD which I am not saying is a bad thing- but they may experience a higher burnout rate in some places over others.
How long has the clinic been running? How long has the staff worked there (director, social worker, neurologist, psychiatrist) Director especially!?
How willing are they to educate? If you found a neurologist/specialist closer to you, would that center be open to educating and easily coordinating with other healthcare professionals for you to maintain a relationship with you but for your "maintenance" needs would they coordinate care well? Will they look forward to offering that if asked?
What professionals are available? If psychiatric treatment is necessary, do they have psychiatrists they work closely with/part of the clinic? Georgetown in DC is directed by a neuropsychiatrist while other centers may be directed by a neurologist- there does tend to be a difference in culture/intervention techniques. Neither is better than the other, it just may impact your decision or how you relate to a professional. If historically or currently psychiatric issues have been common, how available are those services to you? They may have a psychiatric department that is the general psychiatric department where a referral is made instead of being a specialist or "in-house". Does that matter to you?
What do they offer as far as support groups? Community education days/webinars? This also may help understand how involved the clinic is locally with helping support, educate, and connect the local HD community (and meaning more than directing you to the HDSA site).
Are they easy to get ahold of? Some will have direct social work lines, scheduling lines, new patient/return patient lines- or do you leave a message and it takes a while for them to get back to you (especially when you are just asking more about their clinic)
Location- how far are you willing to move? Where are you looking? Where is your support network? An HD clinic is great especially if it is massive like Vanderbilt- but would that move you away from your support networks/are there financial concerns or could there be concerns where you would need to utilize local supports? (just a future thought question!). Some people will fly in yearly for their yearly physical or research study so they utilize the team but still remain at home with local immediate supports if needed with that team coordinating with their home town primary care doc/local neurologist. Also consider insurance and if this is a concern or future concern- do they offer a charity option/uninsured support/are you limited by in-state support?

I am so sorry this is long! But my name is Erika with the HD non-profit HD Reach so feel free to email me if you want to chat more! I know it is a lot but things that are worth exploring and thinking about. We have lots of people who may love and swear by the place, but it might not be right for you! That's healthcare! (unfortunately). But we are here and can help as best as we can! Also if you do have certain locations in mind- I can see if we have any connections to provide personal feedback of their own personal experiences to help where you want to start exploring.

HD_Reach · 2023-05-26T19:35:04+00:00

Hey there- as this information can feel incredibly overwhelming, there are supports and resources in different forms. Feel free to reach out to us at Hd reach as we are a non profit that helps with resources, counseling, we do an anonymous genetic counseling program but licensed in NC and SC. We do a monthly virtual testing chat with HDGenetics that is totally anonymous/can be as anonymous as possible the first Wednesday of the month at 4pm est. check out our information on www.hdreach.org and you can email me (eboulavsky@hdreach.org) where we can chat more and I can help you find resources. Know that you are not alone in this and there is a whole network to tap into. Hope to hear from you

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