The Hypersomnia Foundation
2018 Conference Schedule
Baltimore, Maryland
FRIDAY JUNE 1, 2018
3:00 – 5:00 PM – Pre-conference check-in
Avoid the Saturday morning rush and check in early by dropping by “The Raven Room” on the lobby level of the Marriott on Friday afternoon!
PRE-CONFERENCE “Meet and Greet” event
| 5.00 p.m. – 7.00 | James Joyce Irish Pub & Restaurant 616 S. President St Baltimore, MD 21202 |
An informal opportunity for all conference attendees, speakers, sponsors, and other guests to meet up at the James Joyce Pub, within walking distance of the conference hotel. Snacks provided; cash bar. |
HF 2018 CONFERENCE PRESENTATIONS
Baltimore Marriott Waterfront hotel
700 Aliceanna Street
410-384-3000
Location of events: All presentations, both days, will be in the Harborside Salons D & E, 4th floor
The Saturday breakout sessions (at 3:45 pm) will be in the Laurel Rooms, also on the 4th floor
SATURDAY JUNE 2, 2018
| Date/Time | Event/Speaker | Topic/Details |
|---|---|---|
| 7:30 a.m. – 8:30 | Registration and Breakfast: | Hot buffet breakfast provided. |
| 8:30 a.m. – 8:45 | Diane Powell CEO/Board Chair Hypersomnia Foundation |
Welcome and introductions: an overview of the conference schedule and other important details. |
| 8:45 a.m. – 9:30 | David Rye, MD, PhD Emory University |
A Bird’s Eye View: Dr. Rye will share his perspective, as a leader in the field of IH, on the current status of research and treatment. |
| 9:30 a.m. -10:15 | Lynn Marie Trotti, MD, MSc Emory University |
Current Treatments: Dr. Trotti will give an overview of current IH treatment modalities. |
| 10:15 a.m. – 11:00 | Thanh Dang-Vu, MD, PhD Concordia University NOTE: Dr. Dang-Vu has requested that no photos or recordings be made during his presentation. Please also refrain from any sharing of his presentation on social media. |
IH Brain Imaging Study: Dr. Dang-Vu will present his groundbreaking study on brain imaging in IH patients. |
| 11:00 a.m. – 11:15 | BREAK | |
| 11:15 a.m. – 11:45 | Austin Letcher, MS CoRDS at Sanford |
Entrusting your data to CoRDS: CoRDS senior researcher, Austin Letcher, will explain how CoRDS at Sanford collects data to be accessed by researchers while protecting your privacy. |
| 11:45 a.m. – 12:30 | Lynn Marie Trotti, MD, MSc Emory University NOTE: Dr. Trotti has requested that no photos or recordings be made during her presentation. Please also refrain from any sharing of her presentation on social media. |
Preliminary findings from research using HF’s patient registry: Dr. Trotti will present a preview of her research using the CoRDS/HF patient registry. |
| 12:30 p.m. – 1:45 | LUNCH (on your own) | Your conference packet includes a list of nearby eateries. During lunch, a Clinical Trials Resources Table will be set up outside the meeting room and will be available throughout the afternoon. |
| 1:45 p.m. – 2:15 |
Veronica Moore, MA IQVIA™ |
Participating in a Clinical Trial: Veronica Moore (Patient Advocacy/Insights Lead) from IQVIA, a leading global organizer of clinical trials, will lead an interactive session discussing how patient data influence the design of clinical trials and how patients can best engage with the clinical trial process. |
| 2:15 p.m. – 3:15 |
Panel Discussion Moderator: Andrew Powell, JD Panel: Dale Edgar, PhD Andrew Jenkins, PhD Austin Letcher, MS Bruce Scharschmidt, Umecrine Cognition Veronica Moore, MA IQVIA |
How can we help research move into development of new ways of diagnosing and treating IH? The panel will expand on the theme of patient engagement in the research and development process by addressing audience questions, with a focus on how patients can engage at each stage of that process. |
| 3:15 p.m. – 3:25 | Balance Therapeutics | Clinical Trial Announcement |
| 3:25 p.m. – 3:45 | Break | Refreshments provided |
|
3:45 p.m. – 4:45 NOTE: in this time slot there are three sessions to choose from |
Breakout session #1 for people with IH No photos, recordings or social media posts are permitted during any of these three breakout sessions, to protect participants’ privacy. |
HF Board member Amy Haraden will facilitate an informal discussion focused on issues faced by people with IH. |
|
3:45 p.m. – 4:45 NOTE: in this time slot there are three sessions to choose from |
Breakout session #2 for supporters of people with IH No photos, recordings or social media posts are permitted during any of these three breakout sessions to protect participants’ privacy. |
HF Board member Diane Powell will facilitate an informal discussion focused on issues faced by supporters of people with IH. |
|
3:45 p.m. – 4:45 NOTE: in this time slot there are three sessions to choose from |
Breakout session #3 Questions about higher education and IH No photos, recordings or social media posts are permitted during any of these three breakout sessions to protect participants’ privacy |
Board members Celia King and Betsy Ashcraft, along with two graduate students with IH, will be available for an informal session to answer questions about higher education issues and IH, including issues around how to request accommodations and how to evaluate online learning options. |
SUNDAY JUNE 3, 2018
Baltimore Marriott Waterfront hotel
| Date/Time | Speaker/Event | Topic/Details |
|---|---|---|
| 8:00 a.m. – 8:30 | Breakfast | Continental breakfast provided. |
|
8:30 a.m. – 9:15 NOTE: in this time slot, there are two sessions to choose from – see below |
Andrew Jenkins, PhD Emory University |
IH & GABA Dr. Jenkins will describe our current understanding of how GABA(A) receptors are activated and modulated. This presentation will describe how this is different in patients with IH and how these differences could be corrected by therapeutics. |
|
8:30 a.m. – 9:15 NOTE: in this time slot, there are two sessions to choose from – see above |
Isabelle Arnulf, MD, PhD Sorbonne University, Paris |
IH and Women’s issues Dr. Arnulf will share her research on how the events in a woman’s life (such as hormonal issues, birth control, childbirth, breastfeeding and menopause) may affect women diagnosed with IH. Common treatment modalities will also be reviewed. |
| 9:15 a.m. -9:30 | Break / reset room | |
| 9:30 a.m. – 10:15 | Anjel Burgess, JD Burgess & Christensen |
IH and Long Term Disability Ms. Burgess, a disability attorney, will talk about her work advising clients, including IH patients, on their rights and obligations with respect to disability. |
| 10:15 a.m. – 11:00 | Kiran Maski, MD, MPH Harvard UniversityDr. Maski has requested that no photos or recordings be made during her presentation. Please also refrain from any sharing of her presentation on social media. |
Diagnostic challenges in hypersomnia disorders. Dr. Maski will present her research on biomarkers that distinguish IH from narcolepsy in diagnosing these disorders. |
| 11:00 a.m. – 11:45 | Mandeep Singh, MBBS, MD, MSc, FRCPC University of TorontoDr. Singh has requested that no photos or recordings be made during his presentation. Please also refrain from any sharing of this presentation on social media. |
Providing anesthesia care for patients with hypersomnia disorders. Dr. Singh will discuss the anesthesia concerns facing IH patients who are considering surgery. |
| 11:45 a.m. – 12 Noon | Special guest Julie Flygare, JD President & CEO of Project Sleep | Scholarship announcement |
| Closing remarks by Diane Powell, CEO/Bd. Chair, The Hypersomnia Foundation | Next steps! |