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Update on HDSA Community Programs


Opening Remarks: Don Barr, HDSA Chairman of the Board
State of the Society: Louise Vetter, CEO
Empowering HD Families: Bryan Viau 
Focus on the Family Care Forum: Healthy Eating for the HD Family Sam Frank, MD, Stacey Hoffman, RD, LD, CNSD,Sally Gorski, MA, CCC and Kurt Stiles, Chef
Focus on the Family Forum Handout

Friday Workshops

New to HDSA Convention-  HD 101 : Martha Nance, MD
Early Stage HD- Cognitive Issues: Jane Paulsen, PhD
Late Stage HD- Later Stage Accommodations: Gwen Johnson, RN, BC

Caregivers – Explaining HD to the Community:
Panel: Eileen Krueger, LSW, Emily Viau and Officer Heidi MillerYouth Ages  9-12- HD 101: Sam Frank, MD

Teens Ages 13-19 – When to Talk About HD:
Martha Diressnack, PhD and Janet Williams, PhD

Young Adults 21 – 29 – New Relationships/When to Talk About HD:
Amy Chesire, LCSW-R, MSG

HDSA Field Leadership- Making the Most of Your Programs
How to’s to Coordinating an Educational Event
Jane Kogan, MSW, Cheryl Lenheiser, LCSW and Virginia Goolkasian

New to HDSA Convention- Research/Clinical Trials 101: Martha Nance, MD

Early Stage HD- Nutrition: Sally Gorski, MA, CCC and Stacey Hoffman, RD, LD, CNSD

Late Stage HD- Medical Management of Late Stage HD: Sam Frank, MD 

Caregivers- Managing Challenging Behaviors: Vicki Wheelock, MD Click here to view recorded presentation

All Attendees- Talking to Kids About HD: Moderator: Jessica Hancock
Panel: Katie Ruberto and Emily Viau

Afternoon Support Groups

HDSA Field Leadership: New Ideas for Community Fund Raisers 

New to HDSA Convention – Genetics and HD: Matt Bower, MS, CGC 

Early Stage HD- Psychiatric Issues in HD: Arik Johnson, PsyD
Click here to view recorded presentation

Caregivers- Managing Challenging Behaviors in LTC: John Brose, MD

HDSA Field Leadership- Tips for Building and Strengthening Your ChapterSimple How To’s to Grow Your Impact



Louise Vetter, HDSA CEO

Following HD Science: Why it Matters
Marcy MacDonald, PhD, Massachusetts General Hospital

Understanding Normal Huntington Function
Scott O. Zeitlin, PhD, University of Virginia School of Medicine

HD Therapeutics by Silencing the Mutant Huntington Gene
Neil Aronin, MD, University of Massachusetts Medical School 

Q&A Session Part 1


Synaptic Dysfunction as a Target for Therapy in Huntington’s Disease
Mahmoud A. Pouladi, PhD, University of British Columbia

Enroll-HD: Engaging in Clinical Research
Mark Guttman MD, FRCPC, Center for Movement Disorder

Closing Remarks and Q&A Part 2
Marcy MacDonald, PhD, Massachusetts General Hospital

Saturday Workshops

Living At Risk- Family Planning: Carol Ludowese, MS, CGC

Mid Stage HD- Workplace Accommodations and HD: Cheryl Erwin, JD
Caregivers- Family Dynamics of Special Needs Planning: Robert Westbrook

All Attendees- Be An Advocate for HD: Peggy Tighe, JD and Jane Kogan, MSW

Support Groups

Juvenile Onset HD- Diagnosing JHD: Martha Nance, MD<

What You Missed Yesterday- Psychiatric Issues: Arik Johnson, PsyD

Potential New Therapies

Bill Kaemmerer, PhD – Medtronic
Martin Goulet, PhD – Alnylam
Patrice P. Rioux, MD, PhD – Raptor Pharmaceuticals
Clarisse Scherer Gagou, MD – Raptor Pharmaceuticals
Vivienne Shen, MD, PhD – Lundbeck
Neil Aronin, MD, Univ of Massachusetts Medical School
Beth J. Hoffman, Ph.D. – Vertex
Anna Teige Wickenberg, MSc – Neurosearch
Living At Risk

Testing Panel: Moderated by: Matt Bower, MS, CGC
& Carol Ludowese, MS, CGC
Mid Stage HD – Medications: Vicki Wheelock, MD
Support Groups Juvenile Onset HD- Caregiver Tips: Jane Paulsen, PhD

Support Groups

What You Missed Yesterday – Explaining HD to the Community:
Panel: Eileen Krueger, LSW, Emily Viau and Officer Heidi Miller
HDSA Field Leadership- Building Your Presence: Social Media, Branding and Website Tips for HDSA
Living At Risk- Spousal Workshop: Amy Chesire, LCSW-R, MSG
Mid Stage HD – Managing Mid Stage HD: Martha Nance, MD
Juvenile Onset HD- Support Group for Parents: Nina Ross, LISW
What You Missed Yesterday- Cognitive Issues: Jane Paulsen, PhD
Click here to view recorded presentation
HDSA Field Leadership- What You Need to Know AboutThe New Chapter Treasurer’s Manual