Last month’s HF Conference in Baltimore was an amazing experience, for both attendees and presenters. The numbers speak for themselves:
- Almost 200 persons in attendance (including patients, their families and supporters, medical professionals and researchers, and pharmaceutical and other industry representatives)
- Over 15 presenters and panelists, speaking on a variety of topics, ranging from current and new treatments for IH and related disorders, to the latest research into IH (including brain scans of IH patients versus non-IH patients), detailed information about anesthesia concerns for IH patients thinking about undergoing surgery, and updates about our hypersomnia registry at CoRDS and how researchers are using that patient information
- And over 70 people with IH and related disorders in a special breakout session, sharing their personal experiences with each other (and an even larger group of their families and supporters sharing their own experiences), thereby ensuring that everyone knew that they were not alone in their hypersomnia journeys
But we wanted to look beyond the numbers, so we asked members of our PAAC (Patient Advisory & Advocacy Council) who served as volunteers during the conference, as well as our conference presenters, to share their own experiences and impressions from the conference with us. Here’s what a few of them had to say:
– My loved one has IH. I was especially comforted by the breakout session for family members of IH sufferers. It was a blessing to talk with other people sharing the same experience. The presentations by Dr. Trotti and Dr. Jenkins were extremely helpful also. Both gave us insight as to how these doctors and scientists are working so hard for the IH patients. – Conference Attendee
– I attend a hypersomnia conference for more than just knowledge and awareness. Conferences help me to remember there are researchers, pharmaceutical companies, members of the Hypersomnia Foundation’s Boards, and doctors working tirelessly to help me live a life with hypersomnia. Having the opportunity to speak firsthand with researchers and pharmaceutical representatives gives me the opportunity to be a part of the solution. Meeting new and old friends who understand my hypersomnia is priceless; I don’t have to explain my tiredness and my brain, which I often do in my life with hypersomnia. I am grateful for the opportunity to be recharged and reminded that I am not alone on this sleepy journey I call life, a journey that often makes me feel very alone. – Conference Attendee
– Spending time with a group of people who understand hypersomnia (and, therefore, me) was a very powerful experience. I have never had this kind of experience before. I experienced a very strange awakening as I realized that I was continuing to manage my idiopathic hypersomnia (IH) symptoms quietly and privately, as I always have, in a crowd where EVERYONE absolutely understood. Realizing that everyone did understand was a powerful and liberating experience. – Conference Attendee
– I was amazed by the work that the Foundation is doing to help advance the knowledge, and care, of patients with hypersomnia disorders. –Thanh Dang-Vu, MD, PhD
– From the meet-and-greet until conference end on Sunday, the entire experience was an affirmation and inspiring. The energy and shared values and mission in the diverse population of attendees was palpable. I left with a renewed passion to tame the beast that Hypersomnia is. Also great to see old friends and faces and to welcome new attendees. – David B. Rye, MD, PhD
– It was so nice to speak at the conference. I enjoyed meeting the hypersomnia community immensely. – Mandeep Singh, MBBS, MD, MSc, FRCPC
– One of my favorite speaking events of the year is always the Hypersomnia Foundation conference! I love having the opportunity to share updates about the exciting advances that are being made and to catch up with all the hardworking Foundation volunteers and board members. This year, I especially enjoyed the chance to hear outstanding talks by other hypersomnia researchers from around the world. – Lynn Marie Trotti, MD, MSc
We also want YOUR feedback on the conference! On June 19, we sent an email to all conference attendees, asking them to complete an online Survey about their experience at the conference. (We also sent a reminder Email on July 6.) If you have already completed the Survey, thank you! If you haven’t, we would really appreciate it if you could please complete it, as we need your feedback in order to learn what we did well, and where we need to improve. Your Survey responses will help us make the next HF conference even more successful.
Finally, we also want to thank everyone (including our conference sponsors and other donors) who made this conference possible. Without your financial support, the HF would not be able to host patient-focused events like last month’s conference. As a nonprofit organization, we are totally dependent on your donations to help us achieve our goals of increasing awareness of IH and related sleep disorders, and improving the lives of those who suffer from hypersomnias. Please consider DONATING NOW to help us continue with this vitally important work.