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#HDCONNECT Retreat

June 23, 2025

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

We are incredibly excited to host a new program, #HDCONNECT, an interactive two-day retreat held in conjunction with the Help4HD Symposium on September 5-6 in Ft. Lauderdale, Florida.

This retreat will offer young people (14-30) in the US the chance to meet others impacted by HD to learn about HD through educational workshops and shared experiences. This retreat will combine traditional conference-style sessions with summer camp-inspired community building. For those selected to attend, HDYO will cover the travel and hotel costs.

Goal - We aim for young people attending this retreat to benefit by feeling less isolated, more supported, as well coming away from this retreat with an improved understanding of HD and strong peer connections with other young people in similar situations. This will be a youth focused track that will run parallel to the Help 4 HD Symposium.


General Details

When: September 5-6, 2025

Where: Bahia Mar Fort Lauderdale Beach - a DoubleTree by Hilton Hotel

Who can apply?

  • Young people ages 14-17 who are impacted by Huntington's disease who live in the United States (must be accompanied by a guardian at least 25 years old)

  • Young people ages 18-30 who are impacted by Huntington's disease who live in the United States

Find Out More Information

Under 18 Information

18 & Older Information

Drafted Schedule

Thursday, September 4

  • Attendees arrive; dinner on your own

Friday, September 5

  • Breakfast on your own

  • 10 a.m. – Check-in and Welcome

    • Large group getting to know you activities
    • Introduction of retreat groups (based on age and self-provided demographics)
  • 11:30 a.m. – Lunch on the beach with groups

  • 12:00 p.m.

  • Group sessions begin (various rooms)

    • Break into small groups for topics like grief and loss, coping etc. based on needs of participants
    • Larger sessions for understanding HD genetics
    • Team building
  • 2 – 3 p.m.

    • Activities – art, free time, Game Over HD, walk, etc
  • 4-5 p.m.

    • Group sessions
  • 5 p.m. Break

    • Dinner – attend the Help4HD dinner reception with group and movie night

Saturday, September 6

  • Check-in with Help4HD Symposium

  • Young Person Track with a mix of:

    • Young caregiver stories
    • What symptoms mean and how to navigate those
    • Talking about HD
    • Support Services
    • Activities/Free Time
  • Lunch will be provided through Help4HD

  • Sessions continue

    • What’s next when you go home? Post event let-down
  • Dinner reception through Help4HD


Advocacy Partners

Program Partner

Help4HD

Supporting Partners

HD Reach NYA logo

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