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Drs. Jack Kerrigan & Jean Regis, Co-Chairs
IInd International Symposium for HH
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2013 HIGHLIGHTS
- Hope for HH funds its first research project to determine whether the expression of specific components related to signaling between nerve cells (synaptic transmission) are responsible for HH epileptogenic activity. Congrats to grantee: Denis Lecavalier, PhD 5, Arizona State University & Barrows Neurological Institute.
- Stay tuned for news in 2014 regarding a very exciting gene sequencing project (looking at genes for genetic causes of HH) underway in collaboration with Duke University (USA), University of Melbourne (AU) and Barrows Neurological Institute (USA).
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Top L to R: Rekate, Kerrigan, Curry, Soeby & Regis
Bottom L: Soeby, Miller, Pierron-Jordan
Bottom R: Kerrigan, Cross, Arzimanilgou
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- Huge thanks to Dr. Regis (MAB), Emma Kane (Board) and Cecile Pierron (volunteer) for organizing the IInd International Symposium for Hypothalamic Hamartomas (Marseille, France). 35+ of the world's foremost HH neurosurgeons, neurologists, epileptologists, neuropsychologists gathered together to discuss all aspects of HH.
- Marseille Family Forum welcomed families from France, England, Tunisia, Ireland and the United States for an Q&A session with 3 astute HH doctors: Dr. Curry, Rekate, Regis and Kerrigan joined by Lisa Soeby answered questions. Podcast coming soon.
- If you missed Dr. Craig Miller's testimony the Curing the Epilepsies 2013: Pathways Forward Conference (4/18/2013) before 100's of top epilepsy reserachers - you can read the testimony or watch it here (Go to 9:16 minute mark).
- Thanks to all the families that helped Hope for HH join Epilepsy Foundation and other rare epilepsy organizations to apply for a million dollar grant to create a rare epilepsy registry. Fingers crossed - we will hear in early December whether our community was selected.
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Get muddy, Quilt or Shop...
Use Your Passion to Raise $ for HH!!
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Hope for HH Board Member Wendy Tipps is planning the 3rd annual M-o-o-ving Thru the Mud on May 17, 2014. Huge Thanks to Wendi Tipps who raised $20k in 2012. Hope for HH encourages other families to organize a FUN and FUNDRAISER in your community.
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Our Hope Phoenix Fundraiser. Vote everyday through November and Hope for HH can win $5000. Click here.
Quilter's Bee Giving Fundraiser through 12/15 and support HH! 100% of the proceeds are donated. And read how Marjorie Busby turned her passion for quilting into a donation for HH. Can you turn your passion into $ for a great cause?
 Get Stylin' in a Hope for HH Belt Buckle - interchangeable with other fashionable buckles. 40% of the proceeds go to Hope for HH. The fundraiser is being done in honor of Jason Calhoun. Buy here. |
Do all of your shopping through the online shopping mall , GoodShop.com. Shop at more than 2,600 top online retailers (from Amazon.com to Zazzle) and a percentage of your purchases will go to Hope for HH! Same price for you - donation for HH!
Dine at one of 10,000 participating restaurants around the country and a percentage of what you spend will go to Hope for Hypothalamic Hamartomas. Just sign up a
t
And search the web frequently? Just by using
GoodSearch.com as your web browser, donations will be made to Hope for Hypothalamic Hamartomas. What are you waiting for?
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Can We Count on You NOW & in 2014?
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There are SO MANY ways to get involved in Hope for HH. Pick the one that's right for you. Join Us!
Happy Holidays & New Year!
Hope for Hypothalamic Hamartomas
Board of Directors
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SAVE THE DATE
December 6-10, 2013
Live Near DC?
Walter E. Washington Convention Center
(Washington, DC)
March 22, 2014
National Walk for Epilepsy
(Washington, DC)
May 17, 2014
(Gainesville, TX)
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Our Volunteers
Marjorie Busby, Mike Conroy, Cecile Pierron-Jordan, Maggie Bobrowitz
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Christopher Flanagan after laser surgery.
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Eli Donn with his parents.
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Welcome New Bloggers
Traci Flan, Angela Donn & Kathryn Jensen
Plus Katherine Busby, Susan Jackson, Megan Kramer, Lisa Soeby, Marjorie Busby, Wendy Tipps & Ilene Miller
 | | Faith Jackson & Ezri Busby continue to inspire us with their bravery. |
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And Committed National Walk
for Epilepsy Walkers -
100 Strong!
Our Epilepsy Vision 20-20, Rare Epilepsy & Other Partners
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Hopes Reach Keeps Growing!
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KEY RESEARCH ARTICLES
Neurology Today, Curry, May 2013
***Selected as a Best Paper Pick - one of the noteworthy papers on epilepsy from the American Academcy of Neurology meeting*** - Congrats Dr. Curry!
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MAJOR HH PRESS
US News & World Report, 4/9/2013
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Lisa Soeby, President
Ilene Miller, Vice President
Julie Robinson, Treasurer
Erica Webster, Secretary
Emma Kane, Research Dir.
Wendi Tipps, Fundraising
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Harold Rekate, MD
HH MAB Chairman (2013-2015)
Chiari Institute
Great Neck, NY, USA
Alexis Arzimanoglou, MD
University Hospitals of Lyon
Lyon, France
J. Helen Cross, MD
UCL Institute of Child Health
London, England
Daniel Curry, MD
Texas Children's Hospital
Houston, TX, USA
John Fulton, Ph.D.
BNI at Phoenix Children's
Phoenix, AZ, USA
Simon Harvey, MD
Royal Children's Hospital
Melbourne, Australia
Jack Kerrigan, MD,
Past HH MAB Chair (2010-2012)
BNI at Phoenix Children's
Phoenix, AZ, USA
Maya Lodish, MD
National Institutes of Health
Bethesda, MD, USA
Jean R�gis, MD
Timone University Hospital
Marseille, France
Jeffrey V. Rosenfeld, MD
The Alfred Centre
Melbourne, Victoria, AU
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Mission
Provide information and support to HH patients, caregivers, and healthcare providers and promote research toward early detection, improved treatments, living with HH, and cure.
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