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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 Miller

 

   

Youth 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 Chapter

Simple 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 Massacusetts 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 About

The New Chapter Treasurer's Manual