HF 2018 FULL CONFERENCE SCHEDULE

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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
  Emory University

Austin Letcher, MS
  Sr. Researcher, CoRDS at Sanford

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!

 

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