HDSA Missouri Chapter

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In a significant reversal from its March 2026 position, the FDA has told uniQure that data already collected from AMT-130 clinical trials can support an expedited approval application in the United States.

The FDA also indicated openness to a follow-up trial where participants in the control group would continue on their current standard of care rather than undergoing a sham brain surgery, which would address a major ethical concern the HD community has raised.

uniQure plans to file for approval in the third quarter of 2026.

To read the full press release, click here:https://hdsa.org/wp-content/uploads/2026/06/PR_TypeB-Update_June-2026_06.17.26_Final-1.pdf and to read the Community Letter, visit:https://hdsa.org/wp-content/uploads/2026/06/2026-June-17-uniQure-Regulatory-Update_Community-Statement_Final.pdf

Catch this opportunity!
St. Louis HDSA Trivia is having a quilt raffle. Details are in the photo!
Get your tickets today!

Gayle Tohlen, thank you for your donation. We appreciate your generosity!

Thank you Mayor Guccione and the City of Wentzville for dedicating a Huntington’s Disease Awareness proclamation in response to the Missouri Huntington’s Disease Society of America’s initiative to bring awareness to HD called “Let’s Talk about HD!”

Missouri has been actively involved in various city proclamations for the month of May. We are thankful for the state of Missouri’s Proclamation and several cities throughout Missouri acknowledging Huntington’s Disease Awareness. These cities are:
Columbia, Jackson, St. Louis City, and St. Louis County. We are delighted to add Wentzville to our list of cities. With profound gratitude!

Drum roll .., NEW Support GROUP STARTING

Southeast Missouri Support Group

Molly Koenig, Group Facilitator
All persons and care partners impacted by HD are welcomed to attend.

Southeast will kick off its FIRST Meeting on JULY 1, 2026

Meets the FIRST WEDNESDAY Monthly at 6:00 p.m.

Location:
Trendline Consulting, LLC
1918 N Kingshighway St
Suite 109
Cape Girardeau, MO 63701

Contact Molly at: Molly Koenig at
[email protected]

Any neighboring communities are welcomed and encouraged to attend; this is not limited to Cape Girardeau area only.

A VERY special thanks to Molly Koenig for leading this group, Brittney Hanner for orchestrating the location, and Trendline Consulting, LLC for graciously providing this sacred space to our HD families.

Join us at Raising Cane's, on Tuesday, June 30th!

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