HSG 2019: Navigating HD

HSG 2019 Overview

HSG 2019: Navigating HD brought over 700 of the world’s leading Huntington disease (HD) researchers, health care providers, industry representatives, and members of the HD community to navigate the latest in research findings and treatments for HD.

Photos from HSG 2019

A selection of photos from HSG 2019: Navigating HD is available via flickr below.

HSG 2019: Navigating HD

HSG 2019 Agenda and Presentations


Presentations that have been approved by the presenter, sponsoring organization, and/or the HSG are available for download from the links in the table below. Files have been made available in PDF format only for ease of download, and therefore will not include any interactivity, animation, audio, or video. Absence of a presentation may be due to the presentation having not been approved for distribution, a pending or non-response to request to share the presentation, or because the session did not include a slide presentation.

8:00 am – 9:45 amWelcome & Introductions
HSG State of the Union
Presentation Not Available for Download
9:45 am – 10:15 amFEATURED SESSION: Meeting Keynote (Martin Graham, PhD)
New Paradigms in Drug Discovery & Development:
Bridging the Gap Between Academia and Industry
View Presentation
10:15 am – 11:00 amFEATURED SESSION: HD Insights of the YearView Presentation
11:15 am – 12:00 pmFEATURED SESSION: Patient Reported Outcomes – Quality of Life for End of Life (Carlozzi)Presentation Not Available for Download
12:10 pm – 1:30 pmHSG Working Groups
1) Wearables & Sensors
2) JHD
3) Behavioral
4) Biomarkers
5) Neuropsychology
6) Genetics
Presentations Not Available for Download
1:35 pm – 2:35 pmFEATURED SESSION: An Introduction to Intrathecal Drug Delivery for Huntington’s Disease (Leavitt, Guttman, Bang)
Session Underwriting By:
View Presentation (Bang)

View Presentation (Guttman)
2:35 pm – 3:40 pmFEATURED SESSION: Panel – Combination Drug Products for HD (Kieburtz, Zauderer, Frank, Podskalny, Fox, O’Brien, Hung)View Presentation (Zauderer)

FDA Presentation Not Available for Download
4:00 pm – 5:00 pmPARALLEL SESSION 1: Implications of Genetic Modifiers of HD Trajectory (Gusella, MacDonald)Presentation Not Available for Download
4:00 pm – 5:00 pmPARALLEL SESSION 2: Panel – To Know or Not to Know: Helping Young Adults Begin Their Journey with HD (Nance, Swope, Daley, Sifry-Platt)Presentation Not Available for Download
5:35 pm – 6:25 pmFEATURED SESSION: The Role of Brain Development in Huntington’s Disease (Nopoulos)View Presentation
6:25 pm – 6:30 pmHD Legacy (Yohrling)View Presentation


8:30 am – 8:45 amHSG 2019 Host Site Welcome & Introductions (Wheelock, UC Davis)
8:45 am – 10:15 amFEATURED SESSION: Panel – Exploring Novel HD Assessment Tools (Seeberger, Ross, Stebbins, Fuller, Heatwole, Shoulson)View Presentation (Fuller/Stebbins)

View Presentation (Shoulson)

View Presentation (Heatwole)
11:30 am – 12:30 pmPARALLEL SESSION: HSG 2019 Working Group PresentationsPresentations Not Available for Download
12:30 pm – 1:15 pmFEATURED SESSION: Intracranial Gene Therapy for Neurodegenerative Disorders (Larson)
Session Underwriting By:
Presentation Not Available for Download
1:15 pm – 3:15 pmFEATURED SESSION: HD Innovators Forum (Ross, Leavitt)
Prilenia, MC10, Sage Therapeutics, Annexon, Novartis
Presentations Not Available for Download
3:40 pm – 4:00 pmHSG 2019 Gold Sponsor Scientific Session (Jeffrey Long, PhD)
Challenges in the Design of Premanifest HD Trials
View Presentation
4:15 pm – 5:30 pmFEATURED SESSION: Peter Como HD Symposium Platform PresentationsView Presentation (Byrne)

View Presentation (Pei)

View Presentation (Vogel)
5:30 pm – 6:00 pmFEATURED SESSION: Research Round-UpView Presentation (Vaccinex, Inc.)

View Presentation (Wave Life Sciences)


Family Day

10:15 am – 10:30 amHD CaregivingView Presentation
10:30 am – 12:00 pmBreakout: HD Across the LifecycleView Presentation
10:30 am – 12:00 pmBreakout: Movement, Medicine, and MoodView Presentation (Dunmoyer)

View Presentation (Viau)
10:30 am – 12:00 pmGenetics and HDPresentation Not Availablefor Download
12:30 pm – 1:30 pmGenentech/Roche Family Day PresentationPresentation Not Available for Download
1:45 pm – 3:00 pmHD Research PanelView Presentation (Chesire)

View Presentation (Jackson)

New at HSG 2019

Inaugural HSG Investigator/Coordinator Workshop

The HSG Member Education Committee was established in 2019 to advance the knowledge of our membership through educational training, and to promote clinical trial-ready sites. We were excited to have provided the inaugural full-day training workshop, Investing in the Future – Training Tiger Team Sites on Wednesday, prior to the HSG 2019 general sessions.

We thank all of our session presenters, including Jody Goldstein, Patric Donaghue, Mike Lentine, Anne Van Dusen, Amy Chesire, Jody Corey-Bloom, Andrew Feigin, Samuel Frank, Sandra Kostyk, Julie Stout, Joan Adamo, Richard Dubinsky, Carolyn Gray, Jamie Adams, Emma Waddell, and Karen Anderson.

Support for the session was generously provided by: University of Rochester Medical Center (Elise Kayson), University of California San Diego (Jody Corey-Bloom), Hereditary Neurological Disease Centre (Greg Suter), Georgetown University (Karen Anderson), The Ohio State University (Sandra Kostyk), UT Health McGovern Medical School (Erin Firr Stimming), an anonymous HD family donor, and anonymous Investigator and Coordinator donor.

HSG 2019 Award Winners

The HSG Nominating Committee reviewed nominations from the membership and selected recipients for HSG annual awards that were presented at the HSG 2019 evening reception on Thursday, November 7, 2019. The awards are given to HSG members to recognize them for their dedication as volunteers on HSG committees, as clinical researchers of HSG trials, valuable contributions to HSG, and leadership in HSG training and education initiatives.

HSG Jack Penney Outstanding Investigator Award

This award recognizes an accomplished leader in HD research, who is providing significant contributions toward understanding HD and developing applications that may lead to a breakthrough in biomedical, behavioral, or clinical HD research.

Congratulations to this year’s recipient, Madaline Harrsion (University of Virginia)!

HSG Outstanding Coordinator Award

This award recognizes a HSG coordinator that demonstrates in-depth knowledge of HD clinical trial care and education and the process for internal review. This person skillfully manages the multiple roles of administrator, counselor, enforcer, caregiver, organizer, and scheduler.

Congratulations to this year’s recipient, Amy Chesire (University of Rochester)!

HSG Outstanding Advocate Award

Recognizes one community member that exemplifies leadership and commitment to advocating for the patient community. The recipient of this award will have demonstrated a sincere interest and investment in working on behalf of patients with Huntington disease.

Congratulations to this year’s recipient, Mary Edmondson!

HSG Lifetime Achievement Award

This award is given in recognition of an HSG member who has made a significant and lasting impact on the field and practice of clinical research in Huntington disease through their professional accomplishments, served the profession over an extended period of time, has earned the respect and admiration of professional colleagues and has freely engaged not only contemporaries, but also been committed to maintaining a dynamic connection to all generations of HD practitioners.

Congratulations to this year’s recipient, Martha Nance!

HSG 2019 Scholarship Winners

The HSG is committed to helping support participation to the maximum extent possible by offering a variety of scholarships that help to cover some portion of costs to attend the annual meeting. The HSG was pleased to recognize the following scholarship winners for HSG 2019: Navigating HD:

Shoulson Scholars

Paula Dietrich, PhD (University of Tennessee)
Natalia Rocha, PharmD, MSc, PhD (UTHealth Houston)

Peter Como Scholar

Sarah Gunn, MSc (University of Leicester)

New Member Scholarships

Cynthia Poon (Northwestern University)
Zhen-Yi Andy Ou (University College London)
Meredith Pauly (University of Pennsylvania)
Muhammad Waseem Anjum (Georgetown University)
Tyler Orem (University of Alabama)
Debbi Fox-Davis (HD Reach)
Charlene Hudson (HD Reach)
Will Tanigaki (UTHealth Houston)

Coordinator Scholarships

Jennifer Klapper (University of Pennsylvania)
Kate Greenly (Rocky Mountain Movement Disorders)

CME4HD Scholarships

The HSG wishes to thank the Griffin Foundation for their generous funding support for HSG 2019 CME4HD scholarships.

Rasheda El-Nazer
Venka Veerappan
Joyce Macedo de Silva
Emmanuel Akano

HSG 2019 Abstracts

The HSG Publications accepted 107 abstracts for publication and presentation as part of HSG 2019: Navigating HD. Thank you to all who submitted their work for review and consideration. We are honored to help share and publicize your work in HD!

All accepted abstracts were published in the journal Neurotherapeutics. This year, the publisher has provided complimentary access to the online publication. You can access the HSG 2019 abstracts online by:
1. Using the following link – https://link.springer.com/article/10.1007/s13311-019-00788-3
2. By downloading the HSG 2019 Abstract Publication Guidebook using the button below

HSG Thanks Our 2019 Sponsors!

Gold-Level & Family Day Sponsor

Bronze-Level Sponsors

Friend of HSG Sponsors

Supporting Sponsors