Hypersomnia Foundation--Awareness and Education

by Hypersomnia Foundation, Inc.
Hypersomnia Foundation--Awareness and Education
Hypersomnia Foundation--Awareness and Education
Hypersomnia Foundation--Awareness and Education
Hypersomnia Foundation--Awareness and Education
Feb 21, 2022

Hypersomnia Foundation - Awareness and 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 conferences and hosting educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.

The Hypersomnia Foundation (HF) continues to provide information, resources, and support to the sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.

Recent highlights include

At the start of 2022, we welcomed a new Chair of our Board of Directors, a new member to our Board, and hired our first full-time Chief Executive Officer.

  • Our new Board Chair joined the Hypersomnia Foundation's Board of Directors in 2020. Diagnosed with idiopathic hypersomnia as a young adult, his story is like many others—a long journey with many unanswered questions. His non-profit background and passion for helping others brings more awareness of IH and improved options for those living with it.
  • We welcomed a longtime Hypersomnia Foundation volunteer as the newest member of our Board of Directors. With a close family member diagnosed with IH, he found the Hypersomnia Foundation online, became a volunteer, and grew quite passionate about our work. His wealth of technology skills and experience in leading and building teams is an asset to the Hypersomnia Foundation.
  • At the start of 2022, the Hypersomnia Foundation hired our first full-time Chief Executive Officer. With over 25 years of translating scientific findings into public health messages, award-winning educational programs, and advocacy initiatives, his experience has led to increased awareness and policies related to the impact of undiagnosed sleep disorders, drowsy driving, fatigue in the workplace, and early school start times on public health and safety. “I’m very excited to see how the Hypersomnia Foundation has grown over the last few years and how many treatments are currently being investigated for both narcolepsy and idiopathic hypersomnia,” says HF’s new CEO. “I’m looking forward to expanding our education, advocacy, and research efforts to get more people diagnosed and treated, especially in underserved populations.”  

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The Hypersomnia Foundation’s Diversity and Health Equity Taskforce hosted a virtual workshop in November 2021, “Reaching Every Patient: A Health Equity Conversation,” for the IH, narcolepsy and KLS patient communities. We are aware that there are ongoing challenges when it comes to the inclusion of underrepresented, seldom heard or socially excluded groups. Many people with rare sleep disorders face diagnosis and treatment delays; some don’t seem to get a diagnosis at all. We’ve noticed that many communities are vastly underrepresented in patient registries and clinical trials. To ensure equity in healthcare, it is critical to elevate the perspectives of patients in underrepresented groups and learn from their experiences. During this virtual event, we discussed areas of common interest for people with sleep disorders, shared patient stories, resources, and talked about how we can all play a role in building a wider community. When everyone is diagnosed, our community not only grows, but becomes stronger in our advocacy to get more research and improved treatments.

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At the start of 2022, we hosted a virtual workshop in our ongoing “Meet & Greet” series. “We’re in This Together” was a group discussion about managing life with a sleep disorder. People with IH, narcolepsy, and KLS, and their supporters joined together in a lively discussion sharing their experiences, paths to understanding sleep disorders, and practical ideas for coping. Community advocates, support group leaders, HF Board members, and a psychologist certified in sleep medicine participated in a panel discussion and led small break-out chat groups.

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Throughout the month of December, we highlighted some of the Personal Journey Stories that have been submitted to the Hypersomnia Foundation. Here are highlights from some of the stories we shared:

  • "The first problem was finding a doctor who understood my disorder. I went to a lot of doctors, but they all had to Google my symptoms and told me I was very 'interesting'."
  • "Before I was diagnosed, I thought I was a lazy person. But I’m not. None of us is. But a lot of people don’t get that. I am not lazy. I just can’t help myself."
  • "None of us is alone. And I’m never going to give up. I’m always going to try to make people understand and to accept our disorder. That’s the most important thing for me."
  • "Our son plans to attend college sometime in the near future—we are working to find a way for him to have a chance to succeed. Even as we are trying to find a way for him to have successful treatment now, he looks forward to advances in treatment for IH, so that one day he can return to a more normal existence."
  • "Sometimes I’m sad and I don’t feel as if anyone is listening. I turn on my computer and go to the Hypersomnia Foundation website, and I know that I’m not alone. And that it’s not just in my head."

Many people living with a sleep disorder share the same concerns and experiences and we want to let people know they are not alone.

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We are thrilled to continue collaborating with the AASM Foundation on hypersomnia research grants. The AASM Foundation is committed to improving patient-centered diagnosis and care for all patients with sleep disorders. As announced by the AASM Foundation, “We’re excited to collaborate with the Hypersomnia Foundation in funding for the 2022 Strategic Research Grant: Treatment of Central Disorders of Hypersomnolence and applications for the Strategic Research Grant: AASM Strategic Plan Goals that focus on diagnosis of hypersomnolence disorders.”

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We launched a new “Sleep Hygiene” web page written by one of our Medical Advisory Board members that answers the questions – What sleep habits are most likely to help people who have hypersomnias? What is sleep hygiene? How can sleep be improved?

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We provide free access to the Idiopathic Hypersomnia Severity Scale - a questionnaire designed specifically to measure IH symptoms and serve as a useful tool for patient identification, follow-up visits, and IH management. The IHSS is designed to help healthcare providers, researchers, and people who have IH monitor the severity of the spectrum of IH symptoms over time, including their functional consequences and changes in response to treatments.

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We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 3,800 participants (from nearly 30 countries) creating a vital database for researchers to use as they work to better understand symptoms, treatments and the diagnostic journey of individuals suffering from rare sleep disorders. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research, and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”

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We continue to share important research and other news relating to rare sleep disorders via our free e-newsletter, SomnusNooze, to almost 5,000 subscribers.

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We continue to collaborate with our Patient Advisory and Advocacy Council (PAAC), comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.

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We thank our Diversity, Equity and Inclusion (DEI) Task Force, a group of volunteers and HF Board members, who have been working to help HF better understand the barriers that many people face in getting a correct diagnosis of a sleep disorder. We continue to work diligently with this committee and holding listening sessions with our community as we work to incorporate DEI principles into everything we do.

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We continue to produce educational videos from presentations made by our Medical and Scientific Advisory Boards and experts in fields related to sleep medicine and provide free access to these videos through our website and YouTube channel.

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We continue to increase our Social Media outreach to 9,437 active followers, via Facebook, Instagram, Twitter and LinkedIn. Through these platforms, we actively share information about ongoing clinical trials, provide access to free resources for the sleep disorder community, promote community support groups, and encourage participation in local and national advocacy efforts to increase awareness of sleep disorders and funding for research and access to treatments.

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We continue to expand our education and awareness outreach to family physicians, medical students and residents, school counselors, and nursing associations, by providing free materials and resources to better understand and support patients and students with sleep disorders. Available on our website, our resources include:

  • 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.
  • The “HINT” test, a one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
  • An 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.
  • An IH-specific Medical ID 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.
  • Patient Self-Advocacy guide that provides tips and ideas on how to effectively advocate for the needs of those with a rare sleep disorder.

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We continue to expand 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.

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Organization Information

Hypersomnia Foundation, Inc.

Location: Atlanta, GA - USA
Website:
Facebook: Facebook Page
Twitter: @HypersomniaNews
Project Leader:
Diane Powell
Atlanta, GA United States
$83,295 raised of $150,000 goal
 
528 donations
$66,705 to go
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