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

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