Mar 18, 2019

Hypersomnia Foundation - Awareness and Education

Scholarship Recipient
Scholarship Recipient

The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences and educational events, 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, outreach and educational events in the U.S. and Canada.
  • Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,500 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.
  • 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 4,900 active followers, via Facebook, Instagram, Twitter and LinkedIn.
  • Committed to support five families with a child with IH to attend a family summer camp specifically for children with sleep disorders through a partnership with Wake Up Narcolepsy.
  • Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations will help us Increase awareness of idiopathic hypersomnia through outreach, education and research.

Personal Journey Story
Personal Journey Story
Personal Journey Story
Personal Journey Story
Personal Journey Story
Personal Journey Story
Education Guide
Education Guide
Anesthesia Guide
Anesthesia Guide
Educational Series
Educational Series
Personal Journey Story
Personal Journey Story

Links:

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.


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