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Update on HDSA Community Programs
OPENING CEREMONY
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
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
Saturday
HDSA RESEARCH FORUM – PART 1
Welcome
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
HDSA RESEARCH FORUM – PART 2
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
