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Dec 18, 2018

Increase Awareness of Idiopathic Hypersomnia

The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

The Hypersomnia Foundation has successfully:

  • Increased its outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences.
  • Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,450 participants, thereby collecting vital information for researchers.
  • Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
  • Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
  • Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
  • Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 3,000 subscribers.
  • Supported a scholarship for a college-bound student with IH through a partnership with Project Sleep.
  • Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.
  • Collaborated with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
  • Increased our Social Media outreach to over 4,500 active followers, via Facebook, Instagram, Twitter and LinkedIn.

Links:

Sep 20, 2018

HF advocating for PWIH at scientific symposium

 The Hypersomnia Foundation (HF) was delighted to participate in the 7th International Symposium on Narcolepsy. The HF was invited, along with three other patient advocacy groups “to bring important and diverse perspectives on how best to advocate for and support patients with narcolepsy and related disorders such as idiopathic hypersomnia.” The event was co-directed by Kiran Maski, MD, HF Medical Advisory Board (MAB) member.

 

The previous meeting of this group was held in 2009 in Switzerland, and a book was published in 2011 as a summary of that meeting. Papers will be forthcoming from this Symposium, and HF MAB members Lynn Marie Trotti, MD, MSc, and Isabelle Arnulf, MD, PhD, will be collaborating with other colleagues on a paper differentiating Narcolepsy Type 1 from idiopathic hypersomnia.

 

Mary King and Cat Rye, members of the HF Board of Directors, attended the Symposium and gave a brief presentation to the attendees following an evening dinner. They described the mission of the HF, the current works-in-progress, and the results of a patient focus-group discussion about those HF initiatives of significance to their quality of life. In addition, the Board members chaired an exhibit booth and provided information about the HF, the CoRDS Registry, the HF Research Award Program, and the HF Anesthesia Guide and Patient Care Plan. Discussing the Foundation with attendees in this way provided great networking opportunities for HF Board, SAB, and MAB members.

 

Ms. King and Ms. Rye attended several of the scientific talks that addressed multidisciplinary updates and diagnostic criteria on the basic and clinical aspects of narcolepsy. This year, for the first time, idiopathic hypersomnia was included in the conversation. Along with clinical and scientific sessions, the Symposium also had poster presentations and debates that included about “100 highly respected researchers, clinicians, and patient advocates from around the world…” Chad Ruoff, MD (HF MAB) was lead author of a poster session titled, “The MSLT is Repeatable in Narcolepsy Type 1 but Not Narcolepsy Type2: A Retrospective Study.”

 

During the plenary session Emerging Treatments 1, David Rye, MD, PhD (HF SAB), discussed the larger role of newer treatments for GABA modulators. In addition, Dr. Lynn Marie Trotti presented data from the HF Hypersomnia Registry at CoRDS in a session of the segment Novel Diagnostics and NT2 vs. IH, titled “Sleep inertia characteristics in idiopathic hypersomnia and the narcolepsies within the Hypersomnia Foundation Registry.” Dr. Isabelle Arnulf (HF MAB) gave an interesting talk titled “Creative Thinking in Narcolepsy.” The HF Board members attended the session titled “Ideas for ICSD-4” where they shared information, made observations, and raised questions on behalf of the IH community. Dr. Trotti and Dr. Maski, along with two other colleagues, co-lead that session.


Attachments:
Jun 22, 2018

The Way Forward: #BeyondSleepy in Baltimore

HF Board at the #BeyondSleepy Baltimore Conference
HF Board at the #BeyondSleepy Baltimore Conference

The Hypersomnia Foundation (HF) has been very busy furthering its mission of advocacy, education and research related to idiopathic hypersomnia (IH).

June 2-3, 2018 - The Way Forward: #BeyondSleepy Conference in Baltimore was a resounding success!

With a goal to provide updated, timely and quality information relevant to people with IH (PWIH), supporters, healthcare professionals (HCP), and industry, our presentations covered the following topics:

  • An overview of the current status of research and treatments by Dr. David Rye and Dr. Lynn Marie Trotti
  • An explanation of how CoRDS collects data to be accessed by researchers, while carefully protecting privacy, by a senior research associate from CoRDS (we were also pleased to announce that over 1,000 persons have registered for the HF Registry at CoRDS)
  • Analysis of data from the HF CoRDS registry by Dr. Trotti (also presented thereafter at the APSS SLEEP2018 meeting being held in Baltimore)
  • An interactive session discussing how patient data influence the design of clinical trials and how patients can best engage with the clinical trial process
  • A panel discussion about patient engagement in the development process of new research and treatments, with questions drawn from attendees
  • Information about preparation for, and seeking, long-term disability
  • Ground-breaking research that included: 1) Women’s issues (birth control, pregnancy, breast feeding, and menopause) when diagnosed with IH; 2) Current understanding of how GABA(A) receptors differ in patients with IH; 3) Biomarkers that distinguish IH from narcolepsy; 4) Anesthesia concerns for people with IH when anticipating surgery

Also, three group breakout sessions were offered for people with IH, supporters, and college-age students. Each respective session allowed time for discussion about unique issues, challenges and input within the respective group.

We are working to edit a number of the presentations and will announce when available to view through the HF website via our e-newsletter, SomnusNooze.

June 4-6, 2018 - The 32nd annual meeting of the Associated Professional Sleep Societies (APSS), SLEEP2018 conference in Baltimore, MD. The Hypersomnia Foundation, Inc. hosted an exhibit booth (Booth #256) to introduce its mission, goals, objectives and programs to healthcare professional attendees.

Thanks to an anonymous donor the HF participated in the SLEEP2018 Sleep Walking, an activity promoted by the APSS to encourage traffic to exhibit booths. For a chance to win great prizes, a Sleep Walking card, placed in every SLEEP2018 registration packet, needed to be stamped at stations sponsoring the event. Participation resulted in tremendous traffic for the HF! As a result, HF Board members greeted several hundred sleep healthcare professionals.

Every visitor was offered the HF brochure and introduced to the HF Registry at CoRDS as well as to our Research Award Program. Over 80 national and international sleep professionals treating patients with IH, or other central disorders of hypersomnolence, agreed to distribute HF brochures to their patients and were encouraged to join the healthcare provider directory on our website.

“It’s a wonderful service you [the HF] are doing for a community who feel so isolated,” stated a physician visiting our booth.

June 5, 2018 - Summit hosted by the AAHS (American Alliance for Healthy Sleep). HF Board members were invited and participated in this summit held during the Conference week of SLEEP2018. Board member Cat Rye introduced the HF mission and programs, and all joined in roundtable discussions about increasing collaboration within the patient-centered sleep community, addressing areas of importance for all attendees, including mutual problems, solutions and goals, as well as future areas of collaboration.

Finally, we want to give a shout out to Holly Partridge, who ran the 2018 London Marathon and dedicated her run to the HF through GlobalGiving. We are deeply grateful to Holly’s effort and passion to support IH research: https://www.justgiving.com/fundraising/holly-partridge18.

Your generous donations allow the Hypersomnia Foundation to continue its mission, raising awareness and supporting ongoing medical and scientific research related to idiopathic hypersomnia. Thank you.

Dr. Trotti presenting at the HF conference
Dr. Trotti presenting at the HF conference
Breakout session at #HFconf
Breakout session at #HFconf
2018AAHS Summit
2018AAHS Summit
SLEEP2018 HF Booth
SLEEP2018 HF Booth
2018 HF Conference speakers
2018 HF Conference speakers
 
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