SomnusNooze
Celebrate with HF: Three Years of Awareness, Education, and Research
A message from the new CEO/Chair:
The Hypersomnia Foundation had a great year in 2016! As I look over the list of the year’s accomplishments, I am keenly aware of the tireless dedication and hours of work from the very beginning of HF, that made all this possible: from the founding three years ago through the recent leadership of Cate Murray into a growing non-profit able to achieve so much.
As I begin my term of leadership service, I feel fortunate not only to be working with an incredible Board of Directors, but to have the support of our prestigious Medical and Scientific Advisory Boards.
We also have an important resource in our Advisory and Advocacy Council (known as PAAC): volunteers who have become and will continue to be an important resource for HF’s outreach.
Finally, we are all grateful to our donors who make our work possible, and to the hypersomnia community, for your inspiration. I look forward to working with all of you as we continue on our mission to get #BeyondSleepy!
-Diane Powell
The Hypersomnia Foundation, Inc. (HF) is committed to increasing awareness and education about, and research for better understanding of idiopathic hypersomnia and related disorders. Together with the hypersomnia community we celebrate our third year organized as a public 501(c)(3) charity! As an all-volunteer organization, we are proud of our accomplishments for the hypersomnia community in 2016:
- February 29- HF participated in Rare Disease Day by publishing “A United Effort to Fuel Research on Hypersomnia” in SomnusNooze we updated milestones of the hypersomnia registry, and creating a graphic to share through social media as we prepared to launch mid-year.
- March 6-11- National Sleep Awareness Week – We reached out to our SomnusNooze audience asking for statements about coping with hypersomnia, and received many poignant and powerful responses. The #BeyondSleepy tag-line was created and images developed to capture as FB/Twitter/LinkedIn profile pictures for sharing and spreading awareness about hypersomnia.
- May 16–The HF responded to the NIH’s call for input as it was preparing to set its new research agenda for sleep.
- June 10- A story about idiopathic hypersomnia was on the first page, top of the fold of the Denver Post (http://www.denverpost.com/2016/06/09/idiopathic-hypersomnia-denver-conference/), as we prepared to host our regional meeting in Denver. We also reached out to new and existing Health Care Providers; distributing 2,000 postcards giving information about hypersomnia, HF, and our regional meeting.
June 12- The HF Denver meeting far exceeded our expectations. From the quality of the speakers and their presentations to the number of attendees, and the ability to offer Livestream of the conference due to two generous grants the conference was a huge success. Over 1500 people viewed the HF meeting via Livestream with slightly more than 70% watching from the US; the rest of the viewers were in 11 other countries, including Australia, Norway, France, the UK.- Also on June 12- After two years of seemingly endless revisions and input from researchers, physicians, CoRDS staff, and people with diagnosed with central disorders of hypersomnolence, the Hypersomnia Foundation Registry at CoRDS was launched. This registry, housed through CoRDS (Coordination of Rare Diseases at Sanford), will form the backbone of many future research projects to be conducted by scientists from throughout the world. The registry will garner new insights into the disease processes and help scientists better understand differences between the various hypersomnia disorders. As of this past December, 447 people have completed the CoRDS registry; a boon to future research! Go to https://www.hypersomniafoundation.org/registry/
- June 13-14- Three HF board members, at their own personal expense, attended the annual Associated Professional Sleep Societies (APSS) meeting in Denver to learn about the latest sleep research and clinical practices relating to hypersomnia. Numerous scientific talks and poster sessions were attended, and Board Members met young investigators interested in the study of hypersomnia.
And since June:
- We have developed plans for a SomnusNooze feature called Ask the Doctor. Members of our Medical Advisory Board (MAB) have graciously offered to answer general questions about idiopathic hypersomnia, as well as the other central disorders of hypersomnolence
that include narcolepsy type 1 and 2 and Kleine-Levin syndrome. - We continue to grow our MAB – After our Denver conference we had two new physicians give a resounding “yes” to join Dr. Jason Ong and Dr. Michel Lecendreux. That brings the HF MAB to a total of eight medical healthcare professionals working in the field of hypersomnia.
- The Hypersomnia Foundation was the recipient of a grant from the Trip Advisor Charitable Foundation to increase awareness of hypersomnia! We are most appreciative of these funds to update our website and enhance our social media presence.
- The Hypersomnia Foundation has sought the input of a broad swath of the hypersomnia community in various ways, most notably through the launch of the PAAC: People with Hypersomnia and Advocates Advisory Council. The PAAC was developed as a means to boost communication, gather input, and share ideas with those in the hypersomnia community. The group meets via phone once a month.
And finally…
- The HF Scientific Advisory Board (SAB) is growing and creating a plan to raise awareness about hypersomnia among clinical and basic science researchers. One key component of this plan is a grants program that will financially support innovative research applications that are most likely to positively impact the hypersomnia community. Announcement of this program to the scientific community will depend upon having funds in hand sufficient to attract the best science as well as sustain this initiative. We have been building a research fund since our incorporation and continue to fundraise toward this effort.
- SomnusNooze, our free electronic newsletter, continues — written and edited by volunteers, with all clinical/scientific information vetted by a member of the Medical Advisory Board (MAB). Delivered to over 1,445 inboxes, up 25% since the first of the year, on topics including clinical trial opportunity, summaries of scientific articles, drug and treatment updates, personal Journey Stories, coping tips, new doctor details, information on disability issues, use of service animals, and research opportunities. “Ask the Doctor” feature coming soon. Subscribe below in the yellow banner found on any page of our website at hypersomniafoundation.org.
As we prepare for 2017 we are excited for new opportunities to raise awareness, education and research about idiopathic hypersomnia and related disorders. We appreciate the support, feedback and great ideas from the entire hypersomnia community!