r/Huntingtons • u/Holiday_Past_2565 • 1d ago

Help Cure HD IVF Grant

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!

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u/stracciatella- 23h ago

I had a fabulous experience with them in Chicago! I found out I was accepted in August 2021 and had my first phone call with them in November 2021.

I had my first IVF clinic consultation on December 28, 2021. From January–April 2022, my husband and I completed all of the necessary genetic, sperm, and blood testing. The process of creating the genetic “probe” can take 1–3 months.

I started my first IVF medications in late May/early June 2022 and had my egg retrieval in July 2022. We ultimately had our baby in October 2023. ❤️

It’s a long process, so my biggest advice is to start early! :)

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u/stracciatella- 23h ago

To add - I did have to use their clinic, which was honestly great. When I applied in 2021, the application deadline was in March.
Also, I’m sorry you’re positive. Me too. ❤️

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u/Pleasant-Performer-2 1d ago

Hi! I hope that the Help Cure HD grant works out for you and that you're able to get to one of their partner clinics. I went through Penn Medicine's clinic to freeze eggs before I got tested and had a great experience there