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Sep 13, 2019

Hypersomnia Foundation - Education and Outreach

Dr. Caroline Maness (L) and Catherine Rye (R)
Dr. Caroline Maness (L) and Catherine Rye (R)

Project Summary: 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 our 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.

  • Held a Hypersomnia Educational Meeting in Seattle for over 100 attendees.
  • Expanded our education and awareness outreach to include family physicians, medical students and residents, school counselors, and nursing associations.
  • Created a downloadable Patient Self-Advocacy brochure.
  • Surveyed over 325 individuals about challenges and obstacles they may be experiencing with insurance coverage for IH prescription drugs, providing vital information for our Patient Advocacy Outreach Officer.
  • Awarded our first “Research Award” to Dr. Caroline Maness of Emory University for her proposal entitled “Investigating Cytokine Profiles in the Central Disorders of Hypersomnolence.”
  • Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,800 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.
  • Created a downloadable one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
  • 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 4,200 subscribers.
  • Supported scholarships for five college-bound students with IH through a partnership with Project Sleep.
  • Collaborate through monthly meetings 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 5,200 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.
  • Produced monthly educational videos from presentations made by our Medical and Scientific Advisory Boards.
  • 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.

Dr. Lynn Marie Trotti Educational VIdeo
Dr. Lynn Marie Trotti Educational VIdeo
IH Family Camp
IH Family Camp

Links:


Attachments:
Jun 17, 2019

Hypersomnia Foundation - Education and Outreach

Educational Guides for K-12 and Higher Education
Educational Guides for K-12 and Higher Education

Project Summary: 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 1,700 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.
  • Created a downloadable guide for school counselors to recognize potential sleep disorders in students.
  • 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 3,500 subscribers.
  • Supported scholarships for five college-bound students 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. 
  • Producing educational videos from presentations made by our Medical and Scientific Advisory Boards 
  • 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.

2017/2018 Biennial Report
2017/2018 Biennial Report
Educational Video for Women with IH
Educational Video for Women with IH
Personal Journey Story
Personal Journey Story
Promoting Clinical Trials
Promoting Clinical Trials
West Coast Patient Education Day
West Coast Patient Education Day

Links:

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:

 
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