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60+ EXPERTS 11 COUNTRIES 25 INSTITUTIONS
4th INTERNATIONAL RESEARCH SYMPOSIUM
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When 60+ international HH experts and other progressive thinkers gather together there is an indescribable energy in the room. Guests traveled to Washington, DC from 11 countries and representing 25 institutions to spend Sept. 12-14, 2019 exchanging ideas, sharing experiences, and imagining new opportunities for collaboration in research and clinical practice. Hope for HH has co-organized these research symposiums every 3 years since 2013.
We are incredibly grateful to Dr. William D. Gaillard and Children's National Hospital who co-hosted the event as well as our Steering Committee, Session Facilitators, Working Group leads, presenters and discussants - all who engaged thoughtfully in how to minimize comorbidities (side effects) of HH, treatment and drugs for our patients and families.
Thanks also to our Board, parent volunteers, donors, and sponsors who made the Symposium possible. And we thank YOU our community of patients and caregivers. More than 250 of you responded to the comorbidity survey. The findings were incredibly well received by the researchers and clinicians and raised many critical questions for additional investigation.
We are synthesizing a great deal of information which will soon be available to our community at large including a research roadmap, as well as session and presentations summaries, slides, and videos. Be sure to subscribe to our blog to be the first to receive new information as it is available. Invite your doctors, educators, and community to subscribe to this newsletter to stay informed as well.
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FIRST EVER PIONEER AWARDS PRESENTED
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Meet Rosenfeld Rekate Pioneer Awardees |
On the occasion of Hope for HH's 10th Anniversary celebration, we were thr
illed to recognize three giants in Hypothalamic Hamartoma treatment.
The inaugural Rosen
feld Rekate Pioneer Award was presented to Dr. Jeffrey Rosenfeld (Australia) and Dr. Harold Rekate (USA) for their vision and collaboration that transformed HH surgery and treatment. A third surprise award was presented to HH co-founder and life long advocate, Lisa Soeby, who connected these doctors and helped hundreds of patients access HH surgery worldwide.
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HOPE WELCOMES FIVE NEW OUTSTANDING
MEDICAL ADVISORY BOARD (MAB) MEMBERS
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MADISON BERL, PhD
Director of Research, Division of Pediatric Neuropsychology Pediatric Neuropsychologist
Comprehensive Pediatric Epilepsy Program (CPEP) Children's National Medical Center
Washington, DC, USA
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MICHAEL HILDEBRAND, PhD
Translational Neurogenetics Laboratory in the Epilepsy Research Centre
Melbourne Brain Centre, Austin Hospital
Melbourne, Australia
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JULIA JACOBS-LEVAN, MD
Head of Pediatric Epilepsy,
Alberta Children's Hospital
Calgary, Canada
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WELCOME
NEW
MAB MEMBERS!
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ANDREAS SCHULZE-BONHAGE, MD
Director, Epilepsy Center University Hospital Freiburg
Freiburg, Germany
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VARINA BOERWINKLE, MD
Director of the Neuro-Critical Care, Phoenix Children's Hospital
Phoenix, Arizona, USA
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Symposium weekend ended on a high note with the 3rd Annual Great Strides 5k. Hope for HH Board of Directors and their families joined by volunteer Angela Donn and her family as well Medical Advisory Board members Drs. Hildebrand and Shirozu - ran and walked to the finish line to raise awareness and funds for HH. Special thanks to host Ortho Bethesda and all of our incredible sponsors and participants.
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LOOKING AHEAD TO NOVEMBER
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We can hardly believe it's nearly NOVEMBER. Just a reminder NOVEMBER celebrates National Epilepsy Awareness Month (NEAM)! And Giving Tuesday is also just around the corner - we hope you will remember Hope for HH in your Year End donations.
As we wrap up 2019, its never too late to get involved. You can:
- Share your HH journey in our blog. Contact Erica Webster for more information.
- Celebrate a birthday or anniversary as a benefit for Hope for HH with a Facebook campaign.
- Buy an anniversary shirt (while supplies last). Contact Erica Webster for ordering details.
- Give some extra time and talent as a volunteer now or next year? Complete our Intake.
- Make an end of the year donation? Can you stretch and consider committing to a monthly reoccurring donation. Will your company match your donation?
- Our HH community lost 3 patients to Sudden Unexpected Death in Epilepsy (SUDEP) in 2019 - talk to your doctor, get rescue meds, and have a seizure action plan. Raise awareness on Oct. 23 as part of SUDEP Action Day.
- Raise awareness of HH and epilepsy during National Epilepsy Awareness Month by educating your family, friends, neighbors, co-workers, doctors, schools, nurses and community at large about HH. Strike up a conversation to remove the stigma and educate others.
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Hope for Hypothalamic Hamartomas
Provides information and support to HH patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and cure.
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