…. if one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.
Henry David Thoreau, Walden: Or, Life in the Woods
Just shy of a month ago, our mission’s cornerstones of education, advocacy and research were further realized in significant ways by the inspiring 2015 Hypersomnia Foundation Conference—which highlighted and created wellsprings of hope as we move into the future.
From our fortuitous origins 18 months ago that were indeed serendipitous, a seed was planted with the quip that “a foundation is needed” after a microburst of publicity about a hypersomnia patient at Emory. Thank you, Dr. Rye! Our three Founders—Cat Page-Rye, Jennifer Beard, and Catherine Friederich Murray—became the inaugural Board of Directors and nurtured that seed. Within months, the Foundation was shaping itself into a public nonprofit 501(c)(3) organization. Its groundwork was then laid, beginning with technology and social media, a Medical Advisory Board and a Scientific Advisory Board Chairperson, two additions to the Board of Directors, and connections reaching deeply into the hypersomnia community through our SomnusNooze e-newsletter, SnoozeTV, and Foundation literature (Hypersomnia Foundation Brochure, Clinical Trial Brochure, Tips for Supporters, and 10 (Free) Ways to Support the Hypersomnia Foundation). Initiatives took hold…volunteer recruitment (Share Your Journey entries, scientific writers, conference & events, and representatives attending other patient advocacy meetings and medical meetings), state registrations for fundraising, our Healthcare Provider Directory, the Flumazenil Shortage Impact Survey, the soon-to-be-launched Hypersomnia Foundation Patient Registry at Coordination of Rare Diseases at Sanford, and year-long preparation for the 2015 Hypersomnia Foundation Conference by conference co-chairs Diana Kimmel and Jennifer Beard. Each piece of the groundwork and each initiative has become a wellspring of hope in and of itself.
When the 250+ people gathered at Emory Conference Center last month, it became widely apparent that additional wellsprings were being created…our Conference Volunteer Team lead by Briana Espana; our keynote speakers and presenters; our sponsors, donors, and scholarship angels; and the many members of our community who expressed a desire to be involved with the work of the Foundation. Their anticipated generosity is much appreciated…in donating their time, talents, professional skills, and personal and business resources to affect the future—both their own and that of their loved ones.
Community matters. Involvement matters.
Where is YOUR place in the Foundation’s community?
Thoreau reminds us in Walden that Things do not change; we change. Consider ways in which you can be part of this community and let us know by sending a message to firstname.lastname@example.org. Your involvement can make a difference.
Take the Flumazenil Shortage Impact Survey!
The Hypersomnia Foundation is documenting the effects of this medication shortage on the hypersomnia community. If you have been prescribed flumazenil, please respond to the survey. Your responses will be anonymously tallied and used to inform the public and those in the medical and pharmaceutical industries of the effects of such a shortage on the lives of those diagnosed with hypersomnia.
Take the Survey Here
We Want Your Feedback!
If you attended the 2015 Hypersomnia Foundation Conference, please complete this survey to give us feedback on how we did.
If you did not attend the 2015 Hypersomnia Foundation Conference, we want to know why. Please complete this survey to let us know.