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 Agenda and Presentations
THURSDAY, NOVEMBER 7, 2019
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.
| TIME | SESSION TITLE | PRESENTATION SLIDES |
| 8:00 am – 9:45 am | Welcome & Introductions HSG State of the Union | Presentation Not Available for Download |
| 9:45 am – 10:15 am | FEATURED 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 am | FEATURED SESSION: HD Insights of the Year | View Presentation |
| 11:15 am – 12:00 pm | FEATURED SESSION: Patient Reported Outcomes – Quality of Life for End of Life (Carlozzi) | Presentation Not Available for Download |
| 12:10 pm – 1:30 pm | HSG 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 pm | FEATURED 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 pm | FEATURED 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 pm | PARALLEL SESSION 1: Implications of Genetic Modifiers of HD Trajectory (Gusella, MacDonald) | Presentation Not Available for Download |
| 4:00 pm – 5:00 pm | PARALLEL 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 pm | FEATURED SESSION: The Role of Brain Development in Huntington’s Disease (Nopoulos) | View Presentation |
| 6:25 pm – 6:30 pm | HD Legacy (Yohrling) | View Presentation |
FRIDAY, NOVEMBER 8, 2019
| TIME | SESSION TITLE | PRESENTATION SLIDES |
| 8:30 am – 8:45 am | HSG 2019 Host Site Welcome & Introductions (Wheelock, UC Davis) | |
| 8:45 am – 10:15 am | FEATURED 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 pm | PARALLEL SESSION: HSG 2019 Working Group Presentations | Presentations Not Available for Download |
| 12:30 pm – 1:15 pm | FEATURED SESSION: Intracranial Gene Therapy for Neurodegenerative Disorders (Larson) Session Underwriting By:  | Presentation Not Available for Download |
| 1:15 pm – 3:15 pm | FEATURED SESSION: HD Innovators Forum (Ross, Leavitt) Prilenia, MC10, Sage Therapeutics, Annexon, Novartis | Presentations Not Available for Download |
| 3:40 pm – 4:00 pm | HSG 2019 Gold Sponsor Scientific Session (Jeffrey Long, PhD) Challenges in the Design of Premanifest HD Trials | View Presentation |
| 4:15 pm – 5:30 pm | FEATURED SESSION: Peter Como HD Symposium Platform Presentations | View Presentation (Byrne) View Presentation (Pei) View Presentation (Vogel) |
| 5:30 pm – 6:00 pm | FEATURED SESSION: Research Round-Up | View Presentation (Vaccinex, Inc.) View Presentation (Wave Life Sciences) |
SATURDAY, NOVEMBER 9, 2019
Family Day
| TIME | SESSION TITLE | PRESENTATION SLIDES |
| 10:15 am – 10:30 am | HD Caregiving | View Presentation |
| 10:30 am – 12:00 pm | Breakout: HD Across the Lifecycle | View Presentation |
| 10:30 am – 12:00 pm | Breakout: Movement, Medicine, and Mood | View Presentation (Dunmoyer) View Presentation (Viau) |
| 10:30 am – 12:00 pm | Genetics and HD | Presentation Not Availablefor Download |
| 12:30 pm – 1:30 pm | Genentech/Roche Family Day Presentation | Presentation Not Available for Download |
| 1:45 pm – 3:00 pm | HD Research Panel | View 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
OR
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
