Hope For Hypothamalic
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We hope this year end message finds all of our patients, healthcare providers, partners and donors enjoying warm and wonderful holidays with family. Heartfelt thanks to our:
volunteers for your time; 
fundraisers for your commitment and passion; 
bloggers for sharing your journeys fearlessly; 
walkers for your sneakers; 
doctors, nurses and teachers for your care of our families; 
donors for your support;
epilepsy partners for your tireless advocacy;
HH caregivers for your inspiration and example; and 
most of all hypothalamic hamartoma patients for your courage! 
Tomorrow is #GivingTuesday - a movement to create a national day of giving to kick off the giving season. It's an opportunity for communities to come together to support the causes they care most about. This #GivingTuesday we hope you will support Hope for Hypothalamic Hamartomas with your time, talent & donations!

In 2014, your generous donations funded a HH research project and helped secure a $1M grant for a rare epilepsy registry. In 2015, your support will help us bring HH families together with top researchers for our 2nd Annual HH Family Conference planned for July 2015. These conferences provide HH families with key support and timely information to make key medical decisions!

Hope for HH continues to be run by a very small group of volunteers. We don't try salaries or get paid. We volunteer our time because as caregivers, parents, and grandparents of HH patients, we want to ensure all persons touched by HH have credible information and support through their journey to avoid many of the hurdles we have collectively confronted along the way.

We hope the information that follows will inspire you to get involved with Hope for HH on #GivingTuesday and throughout 2015. You can share your journey on our blog; volunteer your time and talent; plan a local fundraiser; or make a donation to support our 2015 initiatives. No donation of money or time is too small!

Happy Holidays & New Year!
Hope for Hypothalamic Hamartomas 
Board of Directors 

Your Support in 2014 helped ...

Launch the Rare Epilepsy Network, a registry of 9 rare epilepsies, to gather information so we can better understand the cause of these rare conditions and how to cure them. Working with the Epilepsy Foundation, Columbia University and RTI International, this first-of-its kind collaboration was
 awarded $1 million dollar grant to conduct this important research! ALL HH caregivers & patients are encouraged to sign up here to participate. HH has already signed up 26 patients toward our goal of enrolling 111. We are nearly a quarter of the way there - join other HH caregivers and patients and please enroll today!


The Doctors aired a national segment on Dr. Peter Nakaji and two of his recent HH patients. Click here to watch the video. 


3rd Annual M-O-O-VING Thru The Mud with Landon raised $25k+
Thanks to Wendi Tipps and her incredible committee. Counting down to the 4th Annual on May 16th.   Read more here.  

Genzyme Employees run the Boston Marathon in honor of HH!

Eli Donn's Quarter Auction raises $900

Thanks to The Donn Family and Eli's dance teachers who organized a Quarter Auction that raised $900. The auction was a fun way to bid quarters on donated goods from local vendors like Origami Owl, Avon, Thirty One and many more. Angela, Jeff and Eli - we are so grateful. 

Hope for HH Came in 3rd Place (AGAIN) at the National Epilepsy 
Walk for Most Walkers! Save the date for April 11 for the 9th Annual National Walk for Epilepsy in Washington DC. And join Team HH here



 The Journal Epilepsia published Epilepsy, Vol. 55, Issue 8, pages 1154-1156, Aug. 2014 whichHope for Hypothalamic Hamartomas - Co-Founders Stories, was disseminated to thousands of doctors internationally to help raise awareness of HH and reduce the number of misdiagnoses.



Fund research 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 Lecava lier, PhD 5, Arizona State University & Barrows Neurological Institute. 


In 2015, Your Donations Will Help Support... 

HH Family Conference July 10-12th 2015 in Houston, Texas! The conference is being hosted on Saturday by Texas Children's Hospital and will include a full day of talks by top doctors on the latest in HH treatment and research! There will also be fun activities and events to allow families and individuals to meet and share! We will be staying at the beautiful Houston Marriott Medical Center right across the street from the hospital. A special rate and reservation link is available through the hotels website. Reserve your space early as the block of rooms is limited. Email Kathy Jensen or Lisa Soeby with any questions.

Your donations will also support a new and improved website (stay tuned), plus more information, support, programs, research and awareness building!

Shopping Online this Holiday Season? 
 Support HH with a Quick Click...

No matter how you shop for the holidays - a percentage of your shopping, dining and even your searching can go to Hope for HH when you start on the links below. Set them upon your browser then get knock off that holiday gift list and your hope donation all at once. 
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


And search the web frequently? Just by using GoodSearch.com as your web browser, donations will be made to Hope for Hypothalamic Hamartomas. 

Start your search on Amazon Smile - pick Hope for Hypothalamic Hamartomas - (just type it in) as your charity of choice and .5% of your purchases will be donated to HH.   
Provide information and support to HH patients, caregivers, and healthcare providers and  promote research toward early detection, improved treatments, living with HH, and cure.

Board Of Directors
Lisa Soeby, President

Ilene Miller, VP

Julie Robinson, Treas.

Erica Webster, Sec. 

Emma Kane, Research Wendi Tipps, Fundraising
Marjorie Busby, Social Media 

Medical Advisory Board

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 Régis, MD
Timone University Hospital 
Marseille, France 

Jeffrey V. Rosenfeld, MD
The Alfred Centre
Melbourne, Victoria, AU

Hope For Hypothamalic Hamartomas  info@hopeforhh.org  www.hopeforhh.org