HDSA Northeast Ohio Chapter

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HDSA Northeast Ohio Chapter

HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families.

11/03/2026

Join us NEXT Thursday, November 12th, at 11:00 AM ET for a community webinar on the PRECISE-HD Trial, a Phase 3 study evaluating pridopidine in Huntington’s disease.

Learn more about the PRECISE-HD study, what potential participation might involve, and where to find additional information.

The presentation will feature Nils Confer, PhD, Executive Medical Director at Prilenia, along with HDSA's own Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement. Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/WN_j8aCveJNTxCk2yzQpJj5Zg #/registration

11/02/2026

Today, uniQure announced that the FDA has started its formal review of AMT-130, a one-time gene therapy for HD delivered through brain surgery. This review is the next step before any decision about approval.

The FDA granted Priority Review and set a target date of May 1, 2027 to finish its review. This date is a goal, not a guarantee of a decision or approval, and it may change.

The FDA also plans to hold an Advisory Committee meeting, where outside experts review the evidence and give the FDA advice. The FDA makes the final decision. People with HD and families may have a chance to share their experiences with the committee, and we’ll let you know how to take part once details are announced.

uniQure also shared details of its next study. About 200 people will take part, and 2 out of every 3 will receive AMT-130. The others will continue their usual care, with no placebo surgery.

The main measure will be daily function (TFC) after three years. Screening is expected to begin in the US by the end of 2026, with international sites to be announced in the first half of 2027.

To learn more, you can read the full press releases by visiting: https://hdsa.org/news/uniqure-announces-fda-acceptance-and-priority-review-of-the-biologics-license-application-for-ifezuntirgene-inilparvovec-for-the/ and:https://hdsa.org/news/uniqure-regulatory-bla-update-community-letter/

11/02/2026

Amaryllis season is upon us! 🌸🌿

With over 20 amazing products to choose from, with vibrant amaryllis varieties and fragrant paperwhites! 🌺 Shop with confidence knowing that FP (FlowerPower) guarantees all products will grow beautifully. 🌼

Don't forget to credit your order to your chapter or affiliate at checkout! Let's bloom together.

Click:https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa?fbclid=IwY2xjawVMm5BleHRuA2FlbQIxMABwZG9mAWJyaWQRMU5Sa1BCQ3hHSHZLZ1FvRXRzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeB-i-RcxO8lMjCj99u0qwBGZZeAYjXJLf6dYt1lC4chgKX8382DiPYqjcMHQ_aem_fuK2qQo5AaZv1fc_NeVGnw to learn more.

10/30/2026

🌸🌿 Amaryllis season is in full bloom, grab yours today!

With over 20 amazing products to choose from, with vibrant amaryllis varieties and fragrant paperwhites! 🌺 Shop with confidence knowing that FP (FlowerPower) guarantees all products will grow beautifully. 🌼

Don't forget to credit your order to your chapter or affiliate at checkout! Let's bloom together.

Click: https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa?fbclid=IwY2xjawVIQdJleHRuA2FlbQIxMABwZG9mAWJyaWQRMW1RSzVZWWE1Tkc1THBnaTNzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWvdaJkiKlqdWc02gz5_HbIEgsQ3wC7gncFavCyp8dzl_n0780k_Ny4iccqk_aem_enQDobMIoeKbMwOSgR34Ag to learn more.

10/27/2026

Join us on Thursday, November 12th at 11:00 AM ET for a community webinar on the PRECISE-HD Trial, a Phase 3 study evaluating pridopidine in Huntington’s disease.

Learn more about the PRECISE-HD study, what potential participation might involve, and where to find additional information.

The presentation will feature Nils Confer, PhD, Executive Medical Director at Prilenia, along with HDSA's own Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement. Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/WN_j8aCveJNTxCk2yzQpJj5Zg #/registration

10/27/2026

🌸🌿 Fall is in full swing, and Amaryllis season is officially upon us!

With over 20 amazing products to choose from, with vibrant amaryllis varieties and fragrant paperwhites! 🌺 Shop with confidence knowing that FP (FlowerPower) guarantees all products will grow beautifully. 🌼

Don't forget to credit your order to your chapter or affiliate at checkout! Let's bloom together.

Click:https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa?fbclid=IwY2xjawVIQdJleHRuA2FlbQIxMABwZG9mAWJyaWQRMW1RSzVZWWE1Tkc1THBnaTNzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWvdaJkiKlqdWc02gz5_HbIEgsQ3wC7gncFavCyp8dzl_n0780k_Ny4iccqk_aem_enQDobMIoeKbMwOSgR34Ag to learn more.

10/26/2026

Alnylam has shared early results from a trial of its huntingtin-lowering drug, now named brezosiran.

To read Alnylam’s letter to the community, visit:https://hdsa.org/wp-content/uploads/2026/10/EHDN-Summary-for-PAE_Final_21Oct2026.pdf and, to read the full press release, visit: https://hdsa.org/news/alnylam-announces-positive-initial-phase-1b-data-for-brezosiran-aln-htt02-demonstrating-deep-and-durable-huntingtin-lowering-in-huntingtons-disease/

Thank you to the participants and families who made this possible. 💙

10/23/2026

Upcoming webinar!

Join us on Thursday, November 12th at 11:00 AM ET for a community webinar on the PRECISE-HD Trial, a Phase 3 study evaluating pridopidine in Huntington’s disease.

Learn more about the PRECISE-HD study, what potential participation might involve, and where to find additional information.

The presentation will feature Nils Confer, PhD, Executive Medical Director at Prilenia, along with HDSA's own Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement. Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/WN_j8aCveJNTxCk2yzQpJj5Zg #/registration

10/23/2026

Amaryllis season is officially HERE! 🌸🌿

With over 20 amazing products to choose from, with vibrant amaryllis varieties and fragrant paperwhites! 🌺 Shop with confidence knowing that FP (FlowerPower) guarantees all products will grow beautifully. 🌼

Don't forget to credit your order to your chapter or affiliate at checkout! Let's bloom together.

Click:https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa to learn more.

10/21/2026

🌸🌿 Amaryllis season is officially HERE!

With over 20 amazing products to choose from, with vibrant amaryllis varieties and fragrant paperwhites! 🌺 Shop with confidence knowing that FP (FlowerPower) guarantees all products will grow beautifully. 🌼

Don't forget to credit your order to your chapter or affiliate at checkout! Let's bloom together.

Click:https://www.flowerpowerfundraising.com/index.php/marketplace/seller/profile/shop/hdsa to learn more.

Address

New York, NY

Telephone

+12122421968

Website

http://northeastohio.hdsa.org/

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