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YOU Power the Engine for #BeyondSleepy

YOU Power the Engine for #BeyondSleepy

Medical Advisory Board (MAB) and Scientific Advisory Board (SAB) volunteers:

The Hypersomnia Foundation’s Medical and Scientific Advisory Boards, otherwise known as the MAB and SAB, are comprised of world experts in their fields of sleep research and clinical work. The CoRDS registry questions were shaped by the knowledge of this group, who advised the Hypersomnia Foundation (HF) on the kinds of information researchers of idiopathic hypersomnia (IH) and related disorders would find most helpful.

Lynn Marie Trotti, MD, MSc

Lynn Marie Trotti, MD, MSc

David Rye, MD, PhD

David Rye, MD, PhD

MORE on the MAB & SAB: Based in Europe and the U.S., these physicians generously write and vet articles for SomnusNooze, present at HF conferences, advise the Board and alert us to the latest in research, clinical trials, treatments, and diagnostics relating to hypersomnia. We are extremely proud to have the advice of such a distinguished group of professionals – the Boards are chaired by Dr. Lynn Marie Trotti (Medical) and Dr. David Rye (Scientific), and we encourage you to take a moment to read about them and the rest of the MAB and SAB Board members at the links below:

http://www.hypersomniafoundation.org/foundation/medical-advisory-board/

http://www.hypersomniafoundation.org/foundation/scientific-advisory-board/

 

Patient and supporter volunteers – Patient Advisory and Advocacy Council (the PAAC)

Did you know that a group of volunteers meet by phone conference every month and offer feedback to HF and share the needs of the IH community? They always give us their unvarnished, constructive ideas and opinions. They play a valuable role for HF and the hypersomnia community at large, and we are very appreciative!!

Interested in joining the PAAC? It requires commitment to a once a month conference call, usually an hour on a Sunday evening at 8:00 pm ET, with possible email correspondence in between. Members have IH or a related sleep disorder, or have a loved with one of these rare disorders. The group is small to allow for everyone to join in the discussion, but members periodically rotate off. If you are interested in volunteering, please send an email to info@hypersomniafoundation.org with the subject line “PAAC.”

CoRDS  “Data Volunteers”

Earlier this month HF celebrated Idiopathic Hypersomnia Awareness Week (IHAW), aligning with this year’s theme: “Research Changes Lives.”


Over 664 people with IH and related disorders have contributed their data to the HF patient registry at CoRDS – data that is vital to research. We don’t know who you are but want to send out a resounding “thank you” for your time in completing the registry.  

If you completed the CoRDS registry last year, please login to CoRDS and update your information.

 

OUR DONORS because without their shared vision and commitment to help fund the HF programs, research, and “keeping the lights on” the HF could not thrive, grow, get the word out, or sustain awareness, education and research about idiopathic hypersomnia.   No donation is too small or too large!  

http://www.hypersomniafoundation.org/donate/ 

And to those who write and submit Personal Journey Stories, share HF information in all of their social media outlets, use the HF Twibbon, designate the HF in Amazon Giving (smile.amazon.com), wear a HF T-shirt, come to conferences, talk to their healthcare providers about their IH and the HF, participate in support groups, we thank you and are glad you are on this journey with us to #BeyondSleepy.

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