HDSA Missouri Chapter

05/30/2026

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05/30/2026

05/30/2026

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05/27/2026

Looking for a young adult, noninvasive opportunity to become involved in the Missouri HD community?

“ST. LOUIS Hang Out” might just be the opportunity you have been looking for.

Please scan the QR code below to contact Havanna Lowe, founder and facilitator of St Louis Hang Out

Havanna has been an active and valued part of the HD community dating back to her own young experiences as an HD family member, being part of NYA and youth services in various capacities, to formerly serving on the Missouri Board.

Havanna’s unique experiences have landed her into creating this exceeding opportunity for young adults within our Missouri communities.

On behalf of our Missouri HDSA Chapter we are deeply fortunate and grateful to Havanna’s volunteer efforts and dedication to our community and warmly encourage you to consider joining her for a “meet up event.”

05/27/2026

HD AWARENESS MONTH:
Wellness Wednesday Segment

Let’s talk about youth and young adult programs within the HD Community.

As we embark on our final Wellness Wednesday segment for 2026, we shine a light on HDSA youth and young adult services.

Many families may be unfamiliar with these specialized services, our goal is to provide additional information so you and your loved ones become more aware about the programs offered.

MaryAnn Emerick, LMSW is amazing and passionate, she is the Senior Manager of Youth & Community Services at the Huntington's Disease Society of America (HDSA).

MaryAnn oversees the organization's youth services and the HDSA National Youth Alliance (NYA).For the youngest members of families affected by Huntington's disease, HDSA provides specialized services and dedicated youth social workers.

Please contact MaryAnn at: [email protected]
Or Anna (Missouri Chapter Social Worker) at: [email protected] to learn more today!

Resources developed under the youth initiative include:

Youth & Young Adult Mentorship Program: A national one-on-one mentorship platform that pairs youth with trained mentors who understand the unique challenges of growing up in an HD family.

Youth Social Worker Program: A dedicated initiative that recruits and trains social workers within the HD network to provide case management, counseling, and specific resources for children and teens.

National Youth Alliance (NYA): A community branch for children, teens, and young adults (ages 9–35) designed to support young people through advocacy, fundraising, and peer connections.To learn more about these programs or reach out to the services team, visit the HDSA National Youth Alliance.

Remember, “Family is Everything!”

https://www.google.com/url?q=https://nya.hdsa.org/about-nya&sa=U&ved=2ahUKEwj_mOSputiUAxW3rYkEHepcOeoQFnoECDoQAQ&usg=AOvVaw1umoN6IATw_JbCRuX2Wq5d

https://nya.hdsa.org

05/27/2026

HD AWARENESS MONTH:
Wellness Wednesday Segment

Let’s talk about youth and young adult programs within the HD Community

05/26/2026

Introducing HDSA & Me! 💙

A 26-episode series on Youtube covering topics from Adaptive Exercises to Caregiving! 🧘🤝

Want to hear from self-advocates, professors, therapists, and other individuals affected by HD? Scan the QR code below and check out the series!!

05/25/2026

As we approach the end of Huntington's Disease Awareness Month, let's come together to “SHINE A LIGHT” on this important cause.

With tomorrow being the final Monday in May 2026, let's make the most of it by wearing BLUE, sharing and tagging pictures, educating others, and taking advantage of the 2x1 fundraising match.

That’s right, our national HDSA team has shared that a generous donor has pledged to match donations, dollar for dollar, up to $50,000, until the end of May. Every contribution will go TWICE as far in providing vital support to families, advancing research, and ensuring no one faces this disease alone.

Your posts, tags, educational or financial support, any or all, will make a significant impact during HD Awareness month so please SHINE A LIGHT this Monday Missouri!

05/22/2026

Missouri Huntington’s Disease Society of America has been actively involved in various city proclamations for the month of May. Missouri HDSA would like to thank Governor Mike Kehoe for acknowledging May as Huntington’s Disease Awareness month. The proclamation is a part of the HD awareness initiative called “Let’s Talk about HD!”

We are thankful for the cities throughout Missouri acknowledging May as Huntington’s Disease Awareness month are:
Columbia, Jackson, St. Louis City, and St. Louis County.