HDSA Western PA Chapter

09/04/2026

Planning for the future can help provide greater peace of mind and help protect your family through every stage of Huntington’s disease.

In this session from the 41st Annual HDSA Convention, attendees learn about important considerations related to estate planning and special needs trusts, including strategies that can help protect assets, preserve eligibility for certain public benefits, and ensure that a loved one’s needs and wishes are addressed over the long term.

Whether you are planning for yourself, a loved one, or the next generation, this session offers valuable information to help families prepare for the financial and legal considerations that can arise throughout the HD journey.

Please note: This presentation is intended for educational purposes only and should not be considered legal or financial advice. Individuals and families should consult with qualified professionals regarding their specific circumstances.

Visit: https://youtu.be/mkL_XrYAPdY to watch the full video.

Learn more about the Huntington’s Disease Society of America and find additional resources at HDSA.org.

09/03/2026

HDSA is hosting a webinar featuring the Novartis clinical development team to share the latest updates on the INVEST-HD Phase 3 trial evaluating votoplam for Huntington’s disease.

The first study sites are now open in North America, with more expected to follow around the world. The trial aims to include about 770 participants across more than 30 countries.

In this recorded session, Dr. Beth Borowsky and Dr. Harry Ramos provide an overview of the study, share where things stand today, and outline what to expect as the trial continues to roll out.

We invite you to submit your questions for the Novartis team when you register.

Questions from the community will be addressed during the webinar.

Visit: https://hdsa-org.zoom.us/webinar/register/2617749901893/WN_X5HpkIPfQxG-3ePjj0hF_A #/registration to learn more

09/02/2026

Today, uniQure announced it has submitted a Biologics License Application, or BLA, to the FDA for AMT-130, an investigational gene therapy for Huntington's disease. A BLA is the formal request a company files asking the FDA to review a treatment for approval. They also submitted an application to UK regulators.

This is a real milestone after a long road, and we know our community has followed every twist and turn of this program. While this application stands on promising data from a small number of people, the FDA still has to review everything carefully, and it will be some time before we know the outcome. HDSA will keep you posted as it unfolds.

Visit:https://hdsa.org/wp-content/uploads/2026/09/uniQure-Announces-Submission-of-Biologics-License-Application-for-Ifezuntirgene-Inilparvovec-AMT-130-in-Huntingtons-Disease.pdf for more information.

09/02/2026

HDSA is honoring Marjorie with the goal of helping HD families!
One of Marjorie's most important beliefs was that together we could find answers. This Founder's Day, a friend of the HDSA mission has pledged to match dollar for dollar - up to $20,000 - any donation to HDSA on Founder's Day! This means every dollar you donate on Founder's Day will have DOUBLE the impact for HD families.

Please help us achieve our goal and seize this amazing matching gift opportunity! Please join us on September 18th for a very special 24-hour day of giving dedicated to Marjorie Guthrie, her legacy, and the movement she inspired that led to the establishment of HDSA.

Add To Your Calendar:
https://www.addevent.com/event/5hnc64zml3xz
or
Give Now. Learn More:
https://give.hdsa.org/campaign/836039/donate

09/01/2026

The HDSA Research Forum provides the Huntington’s disease community with an overview of the evolving HD research landscape and a closer look at the road ahead for clinical trials.

Recorded at the 41st Annual HDSA Convention in Phoenix, Arizona, this session features members of HDSA’s Clinical Trial Readiness Taskforce, who discuss the current roadmap of Huntington’s disease clinical trials, emerging opportunities in the research pipeline, and the work underway to help ensure the HD community is prepared for future studies and potential therapies.

The conversation also highlights the importance of clinical trial readiness, education, and community engagement as research continues to advance.

Visit: https://youtu.be/1gS3e9ahF3k to watch the full video.

Learn more about HDSA’s research programs, clinical trials, and resources at HDSA.org/research.

Help for Today. Hope for Tomorrow.

08/31/2026

https://bc3.edu/bc3-calendar/event-details/b2fdd389-a3b0-4e1f-bedc-e2712d687055

08/28/2026

https://give.hdsa.org/event/2026-patient-education-day-west-virginia/e807883

Join HDSA for the West Virgina Patient Education Day! It'll be a powerful day of learning, resources, and connection for the Huntington’s disease community.

08/28/2026

The HDSA National Youth Alliance (NYA) Talent Show is always a special Convention tradition—bringing together creativity, connection, and plenty of fun from across the HD community.

Recorded at the 41st Annual HDSA Convention, this event showcases the talents and personalities of members of HDSA’s National Youth Alliance while celebrating the friendships and sense of community that make the NYA so special.

From performances to memorable moments, the Talent Show is a chance for young people impacted by Huntington’s disease to come together, support one another, and shine.

Learn more about the HDSA National Youth Alliance and resources for young people impacted by Huntington’s disease at HDSA.org/nya.

Visit: https://youtu.be/WNaSWbo_6HQ to watch the full video

08/27/2026

September Family & Friends Group on Thursday, September 3

Date: Thursday, September 3.
Time: 7:00-9:00 pm
Where: St. George Church - 3400 Dawson Street - Pittsburgh, PA 15213.
Parking: There is a small parking lot to the side of the church. Enter on the left side of the church; a large wooden door that leads you to the elevator. Press button 1 in the elevator to lead you down to the church hall.

08/26/2026