In Case You Missed It! – May 2021

Spring is in the air! As you venture outside and enjoy the great outdoors, don’t worry if you’ve missed any of the latest news we’ve shared. Get up to date with this edition of “In Case You Missed It!”

  • WELCOME!: Meet new HF Board members – Veronica Moore and Chip Wernig.
  • MUST SEE: Newly released video, “Diagnosing Hypersomnia Differently: A European Proposal.”
  • READ AND SHARE: Getting support from a mental health professional.
  • INTERESTING READ: WAKIX analyses presented at Conference.
  • RIDE FOR RESEARCH: Join HF’s Sleep/Wake Cyclers Team and raise money for research.
  • GET INVOLVED: Two advocacy opportunities!
  • WE LOVE OUR VOLUNTEERS!: Meet HF Volunteers – Beth Boyce, Christina Brundage, and David Burley.

Don’t worry if you’ve missed anything. We’ve got you covered!


WELCOME OUR NEW BOARD MEMBERS!

The Hypersomnia Foundation is proud to announce two new Board members! We are delighted to welcome Veronica Moore and Chip Wernig to our Board of Directors. “Veronica and Chip have long been supporters of the Hypersomnia Foundation, and we are excited to have two individuals with such talent and experience join the Board,” said Diane Powell, HF Chair and CEO.

VERONICA MOORE is an experienced patient advocacy manager, health equity and inclusion advocate, and public health educator. More than half of her professional career has been dedicated to working with rare disease patient communities. Her experience will significantly help us educate the public and health care providers about IH and will serve as a strong advocate to address health inequities in rare and minority patient communities.

CHIP WERNIG is deeply passionate about sleep disorders, being a parent of one daughter diagnosed with narcolepsy Type 1 and another diagnosed with IH. As a parent who has witnessed his daughters struggle with a sleep disorder, he is committed to support research efforts for finding a cure and to raise awareness so others will not feel isolated in their situations.

Visit the “Leadership” page to learn more about our Board of Directors and Leadership Team. 


𝗡𝗘𝗪𝗟𝗬 𝗥𝗘𝗟𝗘𝗔𝗦𝗘𝗗 𝗩𝗜𝗗𝗘𝗢

We are excited to release the video recording of Dr. Gert Jan Lammers’ presentation “Diagnosing Hypersomnia Differently: A European Proposal,” shared during the Hypersomnia Foundation’s recent virtual webinar held on May 11, 2021. Some European researchers are already using a new proposed diagnostic criteria for both narcolepsy and IH in patient care and research. Dr. Gert Jan Lammers of Leiden University in the Netherlands, explains what the criteria is, how it differs from the standards currently used in the U.S., and what this means for patients.


MENTAL HEALTH MATTERS

It’s very understandable that people with a hypersomnia, like others with a chronic condition, may sometimes feel depressed and anxious. Stress, frustration, irritability, sadness, and even anger, are not unreasonable reactions.

In support of Mental Health Awareness Month, we encourage you to read an article we originally shared in 2016, written by Diane Powell, Licensed Clinical Social Worker and Chair/CEO of the Hypersomnia Foundation Board of Directors, entitled “Getting Support from a Mental Health Professional.”

Having a chronic condition is difficult, but remember that it is ALWAYS okay to ask for help. Seeing a good therapist can help you make real and lasting positive changes. So please, take care of yourself.


WAKIX ANALYSES PRESENTED

Two analyses from the clinical development program for Harmony Biosciences WAKIX (pitolisant) were showcased at the 2021 American Academy of Neurology (AAN) Annual Meeting.

One of the poster presentations is based on a post-hoc analysis that evaluated the time-to-onset of clinical response for WAKIX and the second poster is based on a pooled analysis of the cardiovascular safety data from the clinical development program for WAKIX in adult patients with narcolepsy.

“These analyses further characterize the efficacy and safety profile of WAKIX and its broad clinical utility for the treatment of excessive daytime sleepiness or cataplexy in adult patients with narcolepsy,” says Harmony’s chief medical officer, Jeffrey Dayno, MD.

Links to both abstracts are in the online edition of “Sleep Review” magazine.


JOIN HF’S SLEEP/WAKE CYCLERS TEAM AND RAISE MONEY FOR RESEARCH

The Hypersomnia Foundation is forming a virtual bike team, the Sleep/Wake Cyclers, to raise money for research on idiopathic hypersomnia and related sleep disorders. Our inaugural ride will be Saturday, June 12, 2021.  All ages and abilities are welcome. Whether you ride two miles or two hundred, ride on a bike trail, around your neighborhood, on a stationary bike in your living room, or across the country on your Harley, anyone who wants to help us raise $20,000 for hypersomnia research is welcome to join our team!

For more information, go to our “Sleep/Wake Cyclers” page.


TWO ADVOCACY OPPORTUNITIES

Ask your Senators to support NIH funding. Members of Congress are working on funding for federal agencies, including those most important to rare disease patients. Research done by the National Institutes of Health (NIH) has led to some of the most exciting scientific discoveries of all time. Many treatments for rare diseases have been developed from the work done by NIH, and it is critically important to ensure that the NIH is well funded in order to drive innovation for current and future generations. U.S. Senator Bob Casey (D-PA) and Senator Richard Burr (R-NC) are circulating a “Dear Colleague” asking their fellow Senators to sign onto a letter supporting robust funding for the NIH. Contact your Senator NOW and ask them to join the fight for strong NIH funding.

Ask Congress to Support the Safe Step Act (H.R. 2163/S.464). This legislation would ensure that rare disease patients have access to treatments they need by improving step therapy protocols. Step therapy, often called “fail first,” is a process that requires patients to take one or more alternative medications chosen by their insurer before permitting patients to access the medicine prescribed by their health care provider. H.R. 2163 and S. 464 would protect rare disease patients in federally regulated health insurance plans by establishing an exemption process, requiring certain exceptions to the step therapy protocols and requiring a time frame for plans to respond to exception or appeal requests. Contact your legislators today to ask them to cosponsor this important legislation.


MEET HF VOLUNTEERS – BETH BOYCE, CHRISTINA BRUNDAGE, AND DAVID BURLEY

As a nonprofit, we deeply value the passion and energy that each of our volunteers brings to the Hypersomnia Foundation. We are happy to introduce you to three of them:

BETH BOYCE

Beth is a bmember of our Patient Advisory and Advocacy Board (PAAC) and a Person living WIth Hypersomnia (PWH)  and became involved with the Hypersomnia Foundation (HF) soon after our founding. She says that by being involved and attending events, HF breathed life into her and has become refreshing validation that there is hope for a better way. Adding that support and advocacy come in many different forms and through the HF, she has found opportunities to help the community in ways that also fit her abilities. Plus, she is grateful for the many wonderful people she has encountered.

Beth enjoys being a member of our PAAC as she works to help further HF’s goals, including working diligently on raising awareness of IH and related sleep disorders. She finds collaborating on resource and education materials particularly satisfying because, like she is known to say, awareness matters.

 

CHRISTINA BRUNDAGE

Christina started volunteering with the Hypersomnia Foundation in 2020, wanting to make a difference for people living with hypersomnia. She is helping with our upcoming Sleep/Wake Cyclers Fundraiser, recently spoke at one of our virtual events about the importance of clinical trials, and is a new member of our Patient Advisory and Advocacy Council.

“The Hypersomnia Foundation is doing an amazing job at raising awareness about hypersomnia and other sleep disorders,” Christina said. “I especially appreciate the Healthcare Provider Directory and the CoRDS registry, the directory is where I finally found a caring doctor, and the registry is where I was notified of clinical trials!”

“I believe it is important for young adults get involved in organizations like the Hypersomnia Foundation because we are the future and we can bring ideas that maybe haven’t been thought of before. I highly encourage anyone who is interested to reach out and see what opportunities are available!”

 

DAVID BURLEY

Board member David Burley, advocates for more sleep disorder research through his work with our International Patient Registry at CoRDS (Coordination of Rare Diseases at Sanford), among his other projects.

David recently shared, “I champion our CoRDS patient registry because I believe it will further the HF’s  goal of improving the lives of those with hypersomnia. This registry, which uses anonymous patient data, helps HF advocate for the needs of the community, educates researchers  about hypersomnia, and guides pharmaceutical companies  to develop future trials and more effective medications for better treatment.”

We are grateful for the willingness of all of our volunteers to support the sleep disorder community in meaningful ways! THANK YOU!

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