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M-O-Oving Thru' The Mud with Landon
A Decade of HOPE
Pioneering Doctors & Courageous Patients Transform Experimental Surgeries to Standards of Care

Over 11 years ago,  Lisa & Jon Soeby traveled from Phoenix, AZ to Melbourne, Australia for surgery by Dr. Jeffrey Rosenfeld for their son CJ after a top US hospital told them a newly developed HH surgical procedure was too risky.
The Soeby's were patient #25. 
With NBC Dateline in tow, the Soeby's journey was chronicled on national TV.

In February 2003, after CJ's successful surgery, 
the Soeby's persuaded the team at Barrow Neurological Institute  to invite Dr. Rosenfeld to Phoenix to demonstrate his technique on six children from the early HHugs online support group.  Under the leadership of Drs. Rekate, Kerrigan and others, the BNI team not only became skilled in using this approach for treating HH, but also refined several other surgical approaches. Since then, BNI has established itself as a comprehensive HH Center and has cared for 100's of patients from around the world. 
But the story of this tiny tumor and surgical interventions continued to evolve. Six years ago, Ilene & Craig Miller were told their son Mark was not a good candidate for endoscopic surgery because of the small size and deep location of his lesion. They were told they could try then still considered experimental Gamma Knife Surgery - pioneered for HH by Dr. Regis at Timone Hospital in Marseille, France. Today, GKS is accepted as one of several standard surgical options regularly offered to HH patients.  
Flash forward to 2011, and many of us have watched with awe as several courageous families travel to TX Children's to have laser surgery performed by Dr. Curry (who credits his colleague Dr. Wilfong for the idea of using the MRI guided laser on HH tumors). Earlier this year, we watched the Dysarts and Rochas undergo this surgery on primetime TV when ABC Nightline chronicled their journeys.  Like the early patients that traveled to Australia, or those that tried GKS, the laser families are a tight group bound by a common experience and offering new hope to patients newly diagnosed and those living with HH.
Meanwhile, earlier this year, Dr. Harold Rekate launched the Hypothalamic Hamartoma Center (HHC) at The Cushing Neuroscience Institute (CNI), part of theNorth Shore-LIJ Health System. In so doing, Dr. Rekate took his years of experience gained at BNI and is now training a whole new group of doctors on how to care for HH patients in a multidisciplinary setting. 
For a tumor that strikes just 1/200,000, it is truly incredible that in 10 years - we have seen the emergence of several new surgical treatments - each an improvement on the one before it. Surgeons now have an arsenal of treatments to offer HH patients tailored to their unique tumor and symptoms. We all know - NO TWO HH PATIENTS ARE ALIKE - individualized treatment is key.
Hope for Hypothalamic Hamartomas is incredibly proud to have a Medical Advisory Board comprised of such medical pioneers in the treatment of hypothalamic hamartomas.   And we are hopeful that through their vision and collaboration, we will better understand the cause and find a cure soon.  
As we say goodbye to 2012 - we celebrate the doctors that give us HOPE, the courageous patients that inspire us, and the journalists that have helped to get the word out about a rare, but nonetheless, devastating tumor.  

Putting HH on the MAP!
From the Dysarts & Rochas sharing their personal journey with millions of viewers during a prime time broadcast of Nightline, to Wendi Tipps outrageous mud run fundraiser,  to Hope's dedicated volunteers testifying at conferences here and abroad, and to the incredible BNI-Hope for HH Symposium for Patients & Caregivers, 2012 will be remembered as a year that HH received international attention. 

More to do and we need you!
Our hearts are heavy at the devastating loss of Grace Webster and Jake Case this past year. Until there is a cure, we will do our best to support every person touched by HH.  May their memories serve as a reminder of all we still need to do. 
Can we can count on you NOW and in 2013? 


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

Erica Webster, Secretary
Emma Kane 
Wendi Tipps
Back Row L to R: Kerrigan, Soeby, Rekate, Regis, & Miller; Front Row L to R: Kane, Cross at AES 2011
Medical Advisory Board


Jack Kerrigan, MD, Chairman
BNI at Phoenix Children's 
Phoenix, AZ, USA

Alexis Arzimanoglou, MD
University Hospitals of Lyon
Lyon, France

J. Helen Cross, MD
UCL Institute of Child Health
London, England

Daniel Curry, M.D.
Texas Children's Hospital
Houston, TX, USA

John Fulton, Ph.D.
BNI at Phoenix Children's
Phoenix, AZ, USA

A. Simon Harvey, MD
Royal Children's Hospital
Melbourne, Australia

Maya Lodish, MD
National Institutes of Health
Bethesda, MD, USA

Jean Régis, MD
Timone University Hospital 
Marseille, France 

Harold Rekate, MD
The Chiari Institute
Great Neck, NY, USA

Jeffrey V. Rosenfeld, AM
The Alfred Centre
Melbourne, Australia 

100 Families Walk For Hope, 3/12
Special Thanks to:
Our Volunteers
Marjorie Busby, Mike Conroy, Roza Wu & Maggie Bobrowitz
Our Bloggers
Katherine Busby, Susan Jackson, Megan Kramer, Lisa Soeby, Marjorie Busby, Wendy Tipps & Ilene Miller
Our Featured Families
Cecile Pierron (coming soon)
Gabriel Evins
Jo Jo Canariato 
Cecile & her daughter, Manuela-Alicia
Our VERY Generous Donors 
And Committed 
National Walk for Epilepsy 
Walkers - 100 Strong!
Our Epilepsy Partners
Vision 20/20
Hopes Reach Keeps Growing! 
Flanagan Family with 4 1/2 yr old Christopher


Hope For Hypothamalic Hamartomas

P. O. Box 721

Waddell, Arizona 85355


COUNTING DOWN TO BLACK FRIDAY & CYBER MONDAY? Fundraise for Hope for HH every time you Shop, Dine & Search .... just a click away!
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