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HSG 2013
November 7-9, 2013
The Omni Charlotte Hotel
Charlotte, North Carolina

For twenty years, the HSG has hosted an annual, internationally recognized forum for training and education of HD researchers and presentation of new findings and treatments. HSG 2013 was held November 7-9, 2013 at the Omni Charlotte Hotel, 132 E. Trade St, Charlotte, NC 28202. This event was made possible through the generous support of our HSG 2013 Sponsors, as well as the contributions of the HSG 2013 planning committees.

The Huntington Study Group wishes to specially highlight one individual, without whom HSG 2013 would not have attained such astounding success. Mary Edmondson (pictured left below) of HD Reach truly made this a special, well-attended, educational and informative, and all-inclusive event, and the HSG cannot thank her enough for her truly invaluable contributions to seeking treatments that make a difference for HD.

The HSG would also like to thank the following individuals in particular for their efforts and contributions in making this event a success: Karen Anderson, Robert Butler, Andrew Feigin, Bonnie Hennig, Krista Kearney and the HD Reach staff, and Christopher Young and the Angels of the Abbey.

Track 1
Study Specific Investigator & Coordinator Training (*Please note study specific investigator and coordinator training are for designated investigators, coordinators, steering committee members and sponsors. If you are unsure of your official status within a study, please contact the study principal investigator)
Track 2
CME Sessions – for all participants
Track 3
CME Sessions – for local providers
Track 4
All Participants
HSG 2013  Agenda
Click links in blue below for presentations from HSG 2013


Thursday, November 7, 2013

4:00pm–6:00 pm
HSG Education/Training #1: Alternative/Novel Methods of Healthcare Delivery
Course Director: Karen Anderson, MD
Course Faculty: Kevin Biglan, MD, MPH and Ron Bartek, MA
6:00pm–7:30 pm
Welcome Reception
    Hosted by: Ira Shoulson, MD
    Introductions by: Karen Anderson, MD
    Special Presentation by: Benjamin Gilmer, MD, MS, MAHEC Family Medicine Residency Program and UNC School of Medicine, Clinical Instructor
    "Finding Dr. Gilmer: A mysterious tale of two family physicians named Gilmer who discover one another through a fateful disease"

Friday, November 8, 2013

Continental Breakfast
7:30am - 8:30am
Behavioral Working Group
Karen Anderson, MD and Mark Groves, MD
Rehabilitation Working Group
Deb Kegelmeyer, DPT, MS, GCS and Anne Kloos, PT, PhD, NCS
Ira Shoulson, MD, Georgetown University, HSG Executive Committee, Chairman
Christopher Young, Director, HD Reach
9"00 am - 10:15am
Course Faculty: Carolyn Drazinic, University of Connecticut
  Ira Shoulson, MD, HSG Chair
  (Grand Ballroom)
Course Director: Mary Edmondson, MD
Course Faculty: Philip M. Rosoff, MD, MA, Martha Nance, MD and Mark Groves, MD
(Grand Ballroom)
   Open Lunch for Attendees
Local Providers Networking Working Lunch
Facilitator: Ann C. Lassiter, Director of Learning and Development, Ally Financial Services
Guests: Charles Sabine and Don Lo, PhD
HD Across the Lifecycle
Course Director: Francis Walker, MD and Vicki Hunt, RN
Developing Multidisciplinary Care in the Community
HSG Education/Training #3: Medical & Mental Health Emergencies
Course Director: Bonnie Hennig, MSW, LCSW, QCSW, DCSW
Course Faculty: Carolyn Drazinic, MD, PhD and Anthony Lechich, MD
(Grand Ballroom)
5:00 pm - 6:00 pm
Discussion Panel: Question & Answer Session with the Educational Course Faculty
(Grand Ballroom)
HD Innovators Forum
(Grand Ballroom)
7:30 pm–11:00pm
Lundbeck Reception
(Grand Ballroom Foyer)

Saturday, November 9, 2013

7th Annual Huntington Disease Clinical Research Symposium
(Grand Ballroom)
Continental Breakfast
Poster Session – Setup and Viewing
8:15am - 9:00am Meet the Author: Guided Interviews with Christine O'Neill & Vicki Hunt
   8:15am - Bonnie Hennig, "Can We Predict When Driving is No Longer Safe for
                 People Who Have Huntington's Disease Using Standard
                 Neuropsychological Measures?"
   8:30am - Louise Vetter, "Social Security Disability for Huntington Disease: 
                 SSA's Fast-Tracked Disability Processes"
   8:45am - Julia Carlson, "Baseline Patterns of HD Patient Reported Outcomes
                 (HD-PROP) in the Reach2HD Clinical Trial"
Introduction – Andrew Feigin, MD, Symposium Chair, and Karen Anderson, MD, Symposium Co-Chair
(Grand Ballroom)
Keynote Presentation I – Matt Ellison, Founder HDYO
“HDYO – The Impact of HD on Young People”
Keynote Presentation II – Blair Leavitt, MDCM, FRCPC, University of British Columbia
“Biomarkers in Pre-Diagnosed HD” Presentation Part IPart II
Platform Presentation I – Kevin Biglan, MD, MPH, University of Rochester Medical Center
PREQUEL: A Multi-Center Phase II Study of Coenzyme Q10 in Pre-Manifest Huntington Disease
Keynote Presentation III – Jane Paulsen, PhD, University of Iowa
“Clinical Features of Pre-Diagnosed HD”
Poster Viewing/Break
Keynote Presentation IV – Neil Aronin, MD, University of Massachusetts Medical School
"Focusing on the mutant huntingtin gene"
Platform Presentation II – Clement Loy, MD, Westmead Hospital
Is Alcohol & Tobacco Abuse Associated With Earlier Age Of Onset & Faster Disease Progression, In Huntington Disease?
Platform Presentation III – Kimberly Quaid, PhD, Indiana University
Panel – Q&A session between the speakers and the audience

Saturday, November 9, 2013        

HD Community Workshop
“A Positive Approach to HD – Why Now Is the Best Time in History to Live with Huntington’s Disease”
(Grand Ballroom)
Welcome and Introduction – Lauren Holder, President, NC-HDSA and Mary Edmondson, MD, President, HD Reach
(Grand Ballroom)
Opening Remarks: “A Holistic Approach to Life with HD”
Charles Sabine, HD Advocate and Workshop Moderator
Ask the Experts: Understanding and Coping with HD Behaviors – Mary Edmondson & Jane Paulsen
Ask the Experts: Living Well: Therapies to Improve Quality of Life with HD – Sarah Dawson & Burton Scott
Ask the Experts: Work and Cognition – Christine O'Neill & Francis Walker
Ask the Experts: Choices for At-risk Individuals: More than Genetic Testing – Debbie Keelean-Fuller & Martha Nance
Presentations from Workshop Leaders
Moderator: Charles Sabine
(Grand Ballroom)
Why It Will Take All Of Us – Participant Recognition
Charles Sabine
Meet the Teams at Wake Forest University UNC and Duke University
HD Family Reception
RiRa Irish Pub
208 N. Tryon St., Charlotte, NC 28202
(704) 333-5554

HSG researchers and clinicians actively engaged in Huntington disease (HD) clinical research will be attending HSG 2013, as well as local practitioners and care providers, members of HD organizations, industry sponsors, and HD community members. 

The Seventh Annual HD Clinical Research Symposium and HD Community Workshop, "A Positive Approach to HD - Why now is the best time in history to live with Huntington’s disease" are both being held on Saturday, November 9, offering a fantastic opportunity for healthcare professionals and HD community members to come together in an open forum.

  • Morning symposium presenting the latest clinical research findings.
  • Afternoon community forum/Workshop discussing various topics which address living positively with Huntington disease.
  • Both events are open and free to all who are interested.

Please read the following press release, providing more in-depth information about this collaborative educational offering: HD Reach Symposium Press Release.

This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of Carolinas HealthCare System/Charlotte AHEC and the Huntington Study Group. The Carolinas HealthCare System/Charlotte AHEC is accredited by the ACCME to provide continuing medical education for physicians.

The Carolinas Healthcare System/Charlotte AHEC designates this live activity for a maximum of 16 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. The National Society of Genetic Counselors (NSGC) has authorized the Charlotte AHEC to offer up to 1.6 CEUs or 16.0 contact hours (Category 1) for HSG 2013.  The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of certification and recertification.


The extraordinary support of the following organizations allows us to continue our commitment to make a difference in the treatment of Huntington disease. We are grateful for your partnership. 

The educational programing at HSG 2013 has been made possible through grants from the following organizations...

Benefactor Sponsors:

Lundbeck Inc.

Patron Sponsors:

Auspex Pharmaceuticals

Supporter Sponsors:


Partner Sponsors:


 CHDI Foundation, Inc.                                            Prana Biotechnology Ltd.


Raptor Pharmaceutical Corp.                       Valeant Pharmaceuticals International, Inc.

Friend Sponsors:


Edison Pharmaceuticals, Inc.                 Huntington's Disease Society of America  


Teva Pharmaceutical Industries Ltd.                           Omeros Corporation     

The Huntington Study Group thanks you for your generous support!
If you are interested in supporting this event, please click here.