Hypersomnia Foundation

The Hypersomnia Foundation presents its 2018 conference for people with
IH and related disorders, their families, and the entire hypersomnia community.

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What is the status of research into hypersomnias and new treatments?

Why does it take so long to get new medications on the market, and what is the process for getting a medication for idiopathic hypersomnia finally approved by the FDA?

Has anything changed in the diagnosis of hypersomnias?

The Hypersomnia Foundation has invited top experts in the field to answer these and other questions. Dr. David B. Rye, MD, PhD, and Professor of Neurology at Emory University’s Sleep Center in Atlanta, will kick off the first day of the conference with an overview of current research, noting that the world of sleep medicine is taking greater notice of IH. A panel of experts will discuss and explain the process of drug development, how statisticians approach the task of assisting research by examining the HF’s CoRDS registry responses, and much more. The conference schedule will include an opportunity for our community and our loved ones to share experiences, what they’ve learned, and how they cope.

We will kick off the weekend with a casual “meet and greet” social event on Friday, June 1,  5 – 7 PM.

Conference hours: Saturday June 2, 7:30 AM – 5 PM and Sunday June 3, 8 AM – 12 Noon. 

The “early bird” discount sales window has closed, but there are still a limited number of tickets available. We expect the conference to sell out. Register now!

Please note: Selected presentations on research, diagnosis, and drug development will be taped, and edited, and then posted on HF’s website later in 2018. Due to conference logistics, we regret that we are unable to offer a livestream of this conference.

General Registration

Register now!

A limited number of tickets are still available @ $99.

Register

Volunteers

As of April 1st, we have a full team of volunteers and are no longer accepting applications, but we hope to see you in Baltimore! If you have already signed up to volunteer, Thank You! We will contact you via e-mail in mid-May.

Conference Weekend Schedule
View the full conference schedule »

Friday, June 1

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!

 “Meet and Greet”

5 PM – 7  PM at the James Joyce Pub

Join us for a casual meet and greet at the James Joyce Pub at 616 S. President Street, a short walk from Baltimore Marriott Hotel. Light snacks will be provided, and there will be a cash bar. Come meet other conference attendees at a favorite local pub and restaurant!

Saturday, June 2: HF Conference – Day 1

7:30 AM – 5 PM at the Baltimore Marriott Waterfront

A hot buffet breakfast will be served during registration and check-in, beginning at 7:30 AM.  The first conference session begins at 8:30. Light refreshments will be available mid-afternoon, and there will be breaks throughout the day. Lunch is on your own, and a list of the numerous restaurants and casual eateries near to the hotel will be provided at conference check-in. Full schedule of sessions: click the link (in blue) above.

Sunday June 3: HF Conference – Day 2

8 AM – 12 Noon at the Baltimore Marriott Waterfront

Continental breakfast will be served beginning at 8 AM. Full schedule of sessions: click the link (in blue) above.

Be sure to stay connected for updates on speakers, details, and more in the weeks to come!

Presenters and Panelists

We are pleased to confirm the following topics and participants. We will finalize the slate of participants within the next few days – watch for our posts on Facebook, Linkedin, Instagram and Twitter, or check back here for updates!

David Rye, MD, PhD

Dr. David B. Rye, MD, PhD, and Professor of Neurology at Emory University’s Sleep Center in Atlanta, will kick off the first day of our 2018 2-day conference with an overview of current research. He will also discuss the growing, increased attention to IH within the world of sleep medicine.

Dr. Rye is Professor of Neurology at Emory University, board certified in Neurology and Sleep Medicine. He has received numerous prestigious awards for his research, including the American Academy of Neurology’s Sleep Science award and the Sleep Research Society’s Outstanding Scientific Achievement Award. He and the Emory team are making new discoveries into the origins and treatments of hypersomnia that are transforming the way medicine is practiced. Dr. Rye is the Chair of the Hypersomnia Foundation’s Scientific Advisory Board.

Lynn Marie Trotti, MD, MSc

The response to our hypersomnia patient registry, hosted by CoRDS, has been extraordinary! We are grateful to everyone who has participated so far and are excited to share new data from the registry at our Baltimore meeting. Dr. Trotti will present an overview of what the registry is collecting and share insights gleaned from analyzing the data.

Dr. Trotti is Associate Professor of Neurology at Emory University in Atlanta, GA. She graduated from Baylor College of Medicine and completed her neurology residency, sleep fellowship, and Masters of Science in Clinical Research at Emory. Her main area of research interest is the central disorders of hypersomnolence. Dr. Trotti also serves as the Chair of the Hypersomnia Foundation’s Medical Advisory Board.

Isabelle Arnulf, MD, PhD

Women & IH: managing the disorder & treatment through the reproductive years

Women with IH and related disorders have unique and challenging issues. Dr. Arnulf will share her research on managing treatment issues in relation to contraception, pregnancy, breastfeeding, and menopause.

Having authored more than 150 publications in peer-reviewed scientific journals, Professor Arnulf is not only one of the world’s leading experts on all forms of hypersomnia, including narcolepsy, idiopathic hypersomnia and Kleine-Levin syndrome, but also Professor of Neurology at the Sorbonne Universités, Pierre and Marie Curie University, and head of the Sleep Disorder Service at the Pitié-Salpêtrière University Hospital in Paris, France.

Dale Edgar, PhD

Dr. Edgar will participate in our panel of experts discussing how patient engagement is key to every step of the drug development process, from enrolling in the registry to marketing approved drugs.

Dale M. Edgar, PhD, is an accomplished scientist, educator, drug hunter, and entrepreneur in the field of sleep medicine. His distinguished career spans nearly 30 years in both academic (Stanford University’s School of Medicine) and industry roles (co-founding Hypnion, later acquired by Eli Lilly). Dr. Edgar is now co-founder and senior vice president of research at Novion Pharmaceuticals, a start-up neuroscience biotechnology company focused on the discovery and development of novel treatments for sleep disorders.

Kiran Maski, MD, MPH

Diagnostic challenges in hypersomnia disorders: procedures and biomarkers. Dr. Kiran Maski will discuss the current challenges in diagnosing narcolepsy and idiopathic hypersomnia, particularly in pediatric populations. She will discuss novel diagnostic procedures and sleep neurophysiological biomarkers that could improve diagnostic accuracy for these conditions.

Dr. Maski is an assistant professor at Harvard Medical School and a child neurologist and sleep medicine specialist at Boston Children’s Hospital. She runs the Neurology Sleep Clinic at BCH and is the assistant program director for the Child Neurology Residency. Dr. Maski has created a hypersomnia clinic at BCH, where she sees children and young adults with central nervous system hypersomnia conditions from all over the world.

Thanh Dang-Vu, MD PhD

Thanh Dang-Vu, MD, PhD

Are there differences in the brain scans of people with IH compared to the brain scans of people who don’t have IH? A Canadian research team recently discovered that there IS a difference. But how are these brain scans different, and what might that tell us about IH? One of the authors of that study, Dr. Thanh Dang-Vu, MD, PhD will share and discuss the results of this important study of cerebral blood flow scans.

Dr. Dang-Vu earned his MD in 2004 and PhD in 2008 at University of Liège in Belgium. He completed post-doctoral fellowships at the Massachusetts General Hospital in Boston and Center for Advanced Research in Sleep Medicine in Montreal. He received research awards from the Sleep Research Society, the European Sleep Research Society and the Canadian Sleep Society. He is currently an Associate Professor at Concordia University (Montreal) and holds the University Research Chair in Sleep, Neuroimaging and Cognitive Health. He is also an attending neurologist and the Associate Director for Clinical Research at the Institut Universitaire de Gériatrie de Montréal, a Clinical Professor of Neuroscience at University of Montreal, and an Adjunct Professor of Neurology at McGill University.

Austin Letcher, MS
Senior Research Associate at Sanford Research

Many of you with IH and related disorders have entrusted your data to our patient registry, housed at CoRDS – over 900 of you! You may have wondered, what is “CoRDS at Sanford”? Why is my data stored there and how is it protected? Austin Letcher, MS, Senior Research Associate at CoRDS, will explain all this and more. Mr. Letcher will also participate in our panel discussion of patient engagement in the research and development process.

Austin has been involved in the field of research since 2011, earning his Master of Science in Biomedical Engineering from the University of South Dakota. He began his research experience in chemistry through synthesizing quaternary ammonia compounds and continued to develop his research skills in tissue engineering by characterizing the properties of alginate hydrogels. Austin began working with the Coordination of Rare Diseases at Sanford (CoRDS) in 2014 and holds Bachelor’s degrees in both physics and chemistry. He applies his laboratory experience to the development of rare disease research and supporting CoRDS operations.

Anjel Burgess, JD

As a prominent disability attorney who has represented clients with sleep disorders, Anjel Burgess will discuss the processes and challenges of obtaining long-term disability coverage. She will also address a topic she recently wrote about in HF’s e-newsletter, the Somnusnooze: the little known SSA Disability Benefit for Disabled Adult Children.

Attorney Burgess received her B.A. from North Carolina State University, an M.A. from the University of South Florida and, in 2008 her J.D. from Georgia State University. Prior to joining Burgess & Christensen, Attorney Burgess practiced civil litigation with an emphasis on insurance defense. Known for her excellence in representation, for the past five years Attorney Burgess has exclusively practiced Social Security Disability Law for adults and children as well as the ancillary areas of Guardianships and Special Needs Trusts. She brings to the Social Security Disability practice her compassion, quest for justice, enthusiasm and desire to help others. By doing so she’s been able to make a positive difference in the daily lives of people who need help the most.

Andrew Jenkins, PhD
Associate Professor of Anesthesiology and Pharmacology

IH & GABA
Dr. Jenkins will describe our current understanding of how GABA(A) receptors are activated and modulated. The talk will describe how this is different in patients with IH and how these differences can be corrected by therapeutics. Dr. Jenkins will also participate in our panel discussion of patient engagement in the research and development process.

Dr. Jenkins is an Associate Professor of Pharmacology and Anesthesiology at Emory University in Atlanta, GA where he also serves as the Division Chief for Basic Science Research. He obtained his Ph.D. in Biophysics from Imperial College, London and has spent more than 25 years investigating the activation and modulation of GABA(A) receptors. In the last 10 years this has included studying the interactions that occur between the receptor and CSF from patients with hypersomnia and how these interactions can be normalized with novel therapeutics.

Mandeep Singh, MBBS, MD, MSc, FRCPC

Providing anesthesia care for patients with Disorders of Hypersomnia: What are the challenges, and what you need to know.

The pathophysiologic underpinnings of idiopathic hypersomnia (IH) and its interactions with anesthetic medications remain poorly understood. There is a scarcity of literature describing patients with IH in the surgical setting, even though patients with IH pose a unique set of considerations (such as oversedation and awareness). Dr. Singh will address the important anesthetic considerations and management plans for IH patients undergoing surgery.

Dr. Singh completed his Anesthesiology training at the University of Toronto, and later completed his Sleep Medicine fellowship training at the University of Toronto. He has the distinction of being the first Canadian physician to be dual-specialized in Sleep Medicine and Anesthesiology. He also completed a Masters in Clinical Epidemiology and Health Sciences Research from the University of Toronto.

His current research interests include evaluating the perioperative (before and after surgery) outcomes in patients with sleep disorders, including disorders of daytime hypersomnolence. Dr. Singh is one of the authors of an article published last year about the anesthesia concerns for patients with idiopathic hypersomnia (IH) who are considering surgery.

Bruce Scharschmidt

Mr. Scharschmidt, currently a Umecrine Cognition Board Member with many years of clinical and industry experience, joins our panel of experts exploring the question: How can we help research move into development of new ways of diagnosing and treating IH? The panel will focus on how patients can engage at each stage of that process.

Dr. Scharschmidt is a liver specialist rather than a sleep specialist, but there are some striking similarities between the sleepiness symptoms experienced by patients with advanced liver disease and the excessive daytime sleepiness experienced by patients with IH. He is currently a member of the Board of Directors of Umecrine Cognition, a small Swedish company developing a drug designed to counteract the effects of endogenous neurosteroids, the powerful natural sedatives which you heard about earlier.

In his academic past, Bruce was Professor of Medicine and Chief of Gastroenterology at Univ. of CA, San Francisco, where he helped start the liver transplant program. He was an NIH-funded investigator, is author of over 200 research and review articles and he has served as Editor-in-Chief of the Journal of Clinical Investigation and President of the American Society for Clinical Investigation.

He entered industry two decades ago and has been responsible for the design and execution of clinical trials leading to approval of multiple vaccines and therapeutics in the US and in Europe, most recently a drug for patients with urea cycle disorders, a rare and sometimes lethal metabolic disorder which can begin in the first few days after birth. He is also a past member of the National Board of Directors of the American Liver Foundation and therefore brings several different perspectives to today’s panel.

Andrew Powell, JD

Mr. Powell, a former biotech executive, will moderate the Saturday afternoon panel discussion on how patients can participate in the research and development of new treatments. Among his post-biotech projects, Mr. Powell serves as HF’s Industry Outreach Officer.

Mr. Powell spent 25 years in the biotech industry. Trained as a lawyer, he worked in various companies that developed innovative drugs. He has also been active in expanding access to healthcare by serving as an advisor to the WIN and Red Segura non-profit healthcare initiatives in Senegal and Honduras, and by working with the Hypersomnia Foundation to engage drug companies in developing treatments for this rare neurological disorder.

He serves on the boards of Aclaris, Inc., a NASDAQ listed biotechnology company, Cure Network Ventures, the enterprise arm of the Gladstone Institutes at the University of California, and NeuDrive Limited, a U.K. company developing technology to disrupt drug development and diagnostics. He is also a Member of the Band of Angels, a group focused on funding and mentoring technology driven start-ups in the San Francisco Bay Area.

Mr. Powell attended Winchester College in England, is a Morehead Scholar from the University of North Carolina at Chapel Hill, and earned a Juris Doctor degree at Stanford.

Veronica Moore, MA
What does it mean to participate in a clinical trial?

Veronica Moore, MA, will present an overview of what it means to participate in a clinical trial including making an informed decision, as well as what to expect when participating in the study. Mrs. Moore will also participate in our panel discussion about patient engagement in the clinical research and development process.

Veronica Moore, MA, is a Patient Advocacy and Insight lead at IQVIA™. She is a patient-centric leader with over a decade of experience working in various roles such as rare disease clinical research manager, project management, patient engagement and clinical trial study design. She also has experience working in the area of community health education and prevention. Mrs. Moore is currently a patient advocacy lead where she is responsible for clinical trial awareness and education activities, developing long term relationships with patient advocacy groups, managing patient engagement strategies for clinical trials, and obtaining patient insights to aide in clinical design and operations. She has committed much of her professional career to ensuring the patient’s perspective is incorporated early into the clinical trial design. She holds a BS Degree in Public Health Studies with a concentration in community health from East Carolina University and an MA degree in Sociology with a concentration in medical sociology from North Carolina Central University.

IQVIA (NYSE:IQV) is a leading global provider of information, innovative technology solutions and contract research services dedicated to using analytics and science to help healthcare stakeholders find better solutions for their patients. Formed through the merger of IMS Health and Quintiles, IQVIA has approximately 55,000 employees worldwide. Learn more at iqvia.com.

“Clinicians, scientists, and the pharmaceutical industry are waking up to the unmet clinical needs of the IH community. The unprecedented fervor, passion, and resources of this community are building and being brought directly to bear on unraveling the mystery that is idiopathic hypersomnia. Advancing understanding of the causes, diagnosis, and treatment of IH will reduce its burden upon the lives it touches.”

– David Rye, MD, PhD
Chair, Scientific Advisory Board

Sponsors

Our thanks and sincere appreciation to our generous conference sponsors:

Legacy Silver Sponsor

Legacy Sponsor

Silver Sponsor


E. Matthew Steinberg, AIF®
Managing Director – Investments
Tel: 215-576-3015

Legacy Sponsor

Legacy Sponsor

Jazz Pharmaceuticals

Gold Sponsor

Accommodations

The Hypersomnia Foundation has reserved a block of rooms at the Baltimore Marriott Waterfront in Harbor East on a first-come, first-served basis.

Baltimore Marriott Waterfront

Address:
700 Aliceanna Street
Baltimore, MD 21202

As of April 16, all discounted hotel rooms are booked. Due to extremely strong demand for the Hypersomnia Foundation’s upcoming conference, our block of discounted hotel rooms at the conference venue (Baltimore Marriott Waterfront) has been fully reserved. We apologize for any inconvenience.

Booking: To book a room at regular rates, call Marriott’s Reservations toll-free number at 1-877-212-5752. Also, there are a number of other hotels within walking (or driving) distance of the conference site (although we do not have discounted rates at the other hotels). So please check an online hotel booking site (such as TripAdvisor.com) to find available hotel rooms nearby, and join us in Baltimore on June 2-3!

Hotel & Suite Amenities

  • All public areas non-smoking
  • Beauty shop
  • Car Rental
  • Concierge Lounge Hours
  • Vending machines
  • Gift/newsstand
  • Coffee/tea in-room
  • Buffet breakfast, fee from: 22 USD
  • Cash machine/ATM
  • Concierge desk
  • Continental breakfast, fee from: 15 USD
  • Full American breakfast, fee from: 16 USD
  • Housekeeping service daily
  • Mobility accessible rooms
  • Newspaper delivered to room, on request
  • Newspaper in lobby
  • Room service
  • Safe deposit boxes, front desk
  • Valet dry-cleaning
  • Virtual Concierge Available

Travel Information

By Air

Three major airports serve Baltimore:

Baltimore/Washington International Thurgood Marshall Airport (BWI), which is 12 miles from the hotel and offers more than 650 flights daily. The airport features easy access to the Light Rail as well as the BWI Amtrak Station. One-way taxi fare from BWI to the hotel is around $45.

Washington Dulles International Airport (IAD), which is in Virginia and is 52 miles from the hotel. One way taxi fare from IAD to the hotel is around $150.

Ronald Reagan Washington National Airport (DCA), which is in Washington, D.C. and 61 miles from the hotel. One way taxi fare from DCA to the hotel is around $120.

Getting to the hotel: None of the downtown Baltimore hotels offer complimentary shuttle service to or from the airports, but shuttle service is available to the Baltimore Marriott Waterfront Hotel via Supershuttle. They offer both an economical shared-ride shuttle service for individuals and a non-stop shuttle service for groups or families.

There are a variety of car rental offices at each of the 3 airports should you choose to rent a car, and valet and self-park options are available at the hotel for a daily charge.

By Bus & Rail

Baltimore’s Penn Station is one of Amtrak’s busiest stations, serving more than 932,800 guests each year, and is approximately 1 mile from the hotel. Call 1-800-USA-RAIL or go to www.Amtrak.com.

The Greyhound Bus station is located 3 miles from the hotel. More info and booking: https://www.greyhound.com/en/

Getting Around

The hotel is conveniently located within walking distance to many attractions: the National Aquarium (.5 mile), the Inner Harbor Attractions (.2 mile), Oriole Park at Camden Yards (1 mile), Little Italy (.1 mile), Port Discovery Kids Powered Museum (.5 mile), and the Baltimore Convention Center (1 mile).

If you prefer a ride, there are several taxi companies in Baltimore (including Yellow and Checker), and both Uber and Lyft operate in the city.

Additionally, Maryland Transit Administration (MTA) operates bus, Metro Subway, Light Rail and MARC train services. There are several bus stops near the hotel. For fares and schedules, please call 888-218-2267 or 410-539-5000 or visit www.mta.maryland.gov.

News & Updates

Watch this space for announcements about speakers, topics, and other conference related information! Or follow us on Facebook, Twitter and LinkedIn.

Follow us on Facebook, Twitter and Instagram! Check out the hashtag #HFconf for updates!

05.01.2018

Full conference schedule now available »

03.29.2018

HF’s block of Marriott hotel rooms nearly full

HF’s block of discounted rooms at the The Baltimore Marriott Waterfront Hotel has booked up quickly. Now, Marriott has agreed to add five more rooms for Friday, June 1 and Saturday, June 2 to help meet the demand. Click the hotel link above, under “Accommodations,” to make your reservation today!

02.27.2018

Canadian researcher to share IH study results at HF’s June 2-3 conference!

Are there differences in the brain scans of people with IH compared to the brain scans of people who don’t have IH? A Canadian research team recently discovered that there IS a difference. But how are these brain scans different, and what might that tell us about IH? We are proud to announce that one of the authors of that study, Dr. Thanh Dang-Vu, MD, PhD, is coming to our conference in Baltimore to share the results of this important study of cerebral blood flow scans.

#HFconf #BeyondSleepy #sleep #hypersomnia #DrThanhDangVu

02.01.2018

FYI: Following our conference, HF to advocate at APSS meeting

After the Hypersomnia Foundation’s conference wraps up on June 3, the APSS (American Professional Sleep Societies) will hold their meeting – SLEEP 2018 – at the Baltimore Convention Center through June 6. The APSS meeting is not affiliated with HF and is intended for sleep medicine professionals. However, the Hypersomnia Foundation has rented an exhibit booth to help spread awareness of our CoRDS Registry data that could help researchers in the development of new treatments!

Questions?

Contact Us!

Have questions about the conference or interested in becoming a sponsor? Get in touch for more information: .

Hypersomnia Foundation

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