4D: Deep Dive into Degenerative Diseases - DD SIG Navigating the Path Episode 4: Huntington’s Disease Society of America (June 28, 2025)

Episode Overview

This episode of "4D: Deep Dive into Degenerative Diseases" focuses on the vital work and resources provided by the Huntington’s Disease Society of America (HDSA), with a particular highlight on local and national support for people with Huntington’s Disease (HD) and their caregivers. Host Ken Vanako interviews Gia Mennoni, social worker for the Greater New York and Long Island HDSA chapter, discussing practical ways patients, families, and clinicians can access resources, the importance of community and support, and new initiatives for youth engagement within the HD community.

Key Discussion Points & Insights

1. Gia Mennoni’s Background and HDSA Role

• Personal Connection to HD: Gia has been active in the HD community since 2012 and took on her current role in September 2024, motivated by her own family’s experience with HD.

  “I've been very active in the Huntington's disease community since 2012. It's very near and dear to my heart as I also have relatives that are battling the disease.” (01:42 – Gia Mennoni)

• Role as Chapter Social Worker: Gia serves as the primary contact for anyone needing HD support in Greater New York/Long Island, connecting individuals with care resources and local Centers of Excellence (Columbia University and Stony Brook University) and leading two support groups—one for caregivers and one general education/community group.

  “As soon as someone does go to a center of excellence, they're automatically connected with speech pathologists, physical therapists, neurologists, genetic counselors... all of those professionals.” (03:17 – Gia Mennoni)

2. Accessing HDSA Resources

• Navigating Care and Professionals: HDSA provides a national helpline and an online map (hdsa.org) to locate Centers of Excellence, local chapters, specialists, and events. Social workers like Gia are compiling local resource guides to connect patients with best-fit allied health professionals.

  “There is a finder on their website, and then they could search wherever they need and get in contact with those individuals as well as specific neurologists.” (05:44 – Gia Mennoni)

3. Support Groups and Special Focus on Youth

• Support Group Platform: HDSA uses "hey Peers" to register and manage support groups, offering options tailored to disease stage, gene status, at-risk individuals, and even gene-negative individuals.
• National Youth Alliance (NYA): There is growing effort to meet the needs of youth affected by HD through NYA, NYA Day at conventions, and regional youth retreats with educational and therapeutic programming.

  “One thing that I think is super, super important is that HDSA has a really big focus on youth. …That organization is all about youth who are impacted by Huntington's disease.” (08:29 – Gia Mennoni)

• Empowering Youth: Education for youth includes both information about the disease and communication skills—for example, helping them develop their “elevator pitch” to share (or not share) their story as they choose.

  “We're giving those tools to children and young adults. So let's work on your elevator pitch. But also validating and acknowledging that you don't have to tell everyone about it.” (16:51 – Gia Mennoni)

4. Community and Educational Events

• Signature Events:
  • Team Hope Walk: Annual event with community engagement, fundraising, and vendor participation.
  • HD Education Days: Local gatherings focusing on education, support, and networking.
  • HDSA National Convention: Large, interdisciplinary event with sessions ranging from basic HD education to the latest in clinical trials, attended by everyone from families to researchers.

    “It is completely interdisciplinary, which is great. So you're learning from those professionals who are seeing it firsthand, but then you also have the families there.” (12:38 – Gia Mennoni)

• Bidirectional Learning: Professionals learn from patient experiences, and families gain directly from top clinical experts.

5. Professional Resources for Therapists

• Education for Providers: HDSA recently launched professional education modules (including CEU credit for social workers), virtual presentations, and a special PT Handbook authored by established leaders in the field.

  “Actually I want to say in the past few months HDSA released education for professionals… you can still go on there for education.” (14:55 – Gia Mennoni)

6. Underutilized Resources and Advocacy for Youth

• NYA and Support for Young Caregivers: Many are not aware of how robust youth programming is—annual free youth retreats, NYA community, and special support for child caregivers.

  “At the end of the day, our caregivers are adults, but our caregivers are also children… we're having, you know, individuals as young as 10 caring for their parents.” (18:18 – Gia Mennoni)

7. Advice for Physical Therapists (PTs) and Healthcare Professionals

• Patience and Empathy: Key qualities for PTs/clinicians working with HD; patients are generally very aware of disease progression, and both they and their caregivers may have already navigated significant stress before even arriving at an appointment.

  “All you need is a little bit of patience… that individual who has Huntington's disease is pretty alert and aware of what is happening to them.” (20:25 – Gia Mennoni)

• Consider the Big Picture: Remember the complexities and day-to-day challenges at home, not just what is seen during the session.

  “You might have just gone through a whole battle in the car or a whole battle in the home just to even get in the car to come to that office.” (20:46 – Gia Mennoni)

8. The "Snowflake Disease" Metaphor

• Heterogeneity of HD: Gia underscores that every person with HD is unique in their symptoms (“If you’ve met one person with HD, you’ve met one person with HD”), with some experiencing primarily physical symptoms and others psychiatric/psychological, even within the same family.

  “I call it… a snowflake disease… everyone with the disease is so different. They might exhibit the same symptoms, but they also might not.” (22:35 – Gia Mennoni)

• Continued Learning: Healthcare providers are encouraged to dig deeper after basic education, as each case will differ.

  “If you do have that general and basic understanding of the disease, and you get your first patient that has Huntington's disease, definitely put in the work to do a little bit more research to really understand some of the complexities…” (23:47 – Gia Mennoni)

Notable Quotes & Memorable Moments

• On Youth Engagement and Changing Attitudes:

  “It used to be this hidden, you know, disease. Don’t talk about it… but younger generations want to talk about it. They want to spread awareness.” (18:07 – Gia Mennoni)

• On Event Impact:

  “You get to walk into a room and not have to explain yourself because everyone just automatically gets it.” (16:21 – Gia Mennoni)

• On Collaborating in the Clinic:

  “It’s not only patience with the individual who has Huntington’s disease… but patience with the caregiver, because… they don’t mean to be frustrated at you, but it could be the whole series of events that just happened before they got to you.” (21:06 – Gia Mennoni)

Timestamps for Major Segments

• [01:36] Gia’s personal background and motivation
• [02:47] Role of a regional HDSA social worker
• [05:23] Finding Centers of Excellence and providers via HDSA online tools
• [06:31] Building a local trusted provider resource guide
• [07:37] Support groups: structure and access; “hey Peers” platform
• [08:29] Spotlight on National Youth Alliance (NYA) and youth programming
• [10:19] Most utilized resources and HDSA events
• [12:20] HDSA National Convention overview
• [14:53] Professional education opportunities via HDSA
• [16:10] Underutilized resources: support for youth and child caregivers
• [18:05] Changing trends: youth want to talk about HD
• [19:56] Advice for physical therapists and all clinicians: patience, context
• [22:30] "Snowflake disease": HD heterogeneity, clinical advice
• [24:40] Lighthearted close: Gia’s passion for coffee/matcha shop reviews on Long Island

Additional Recommendations & Resources

• hdsa.org: Main website, resources, provider maps, professional education, support group registration
• Centers of Excellence: Columbia University and Stony Brook University (for the Greater NY/Long Island area)
• National Youth Alliance (NYA): Youth-specific support programs, annual retreats, NYA Day at convention
• Professional Resources: PT/OT/speech educational modules, handbooks, virtual education events

Tone & Takeaways

The episode is friendly, community-oriented, and geared toward both professionals and families—centered on practical advice, accessibility, and collaboration. Gia highlights not only the resilience of individuals and families facing HD but also underscores the critical value of connection, patience, and ongoing provider education to meet the unique challenges of this population.

Final Message:
If you're a professional new to HD or a family seeking resources, HDSA and its local chapters are an invaluable, approachable entry point—whether you need clinical connections, peer support, or simply a caring voice to help navigate every stage of Huntington’s Disease.