|
|
 |
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. 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
|
|
|
 |
|
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.
|
|
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 R�gis, 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!
|
Do all of your shopping through the online shopping mall, GoodShop.com, where you can 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! You pay the same price as you normally would, but a donation goes to our cause! Get started!
You can dine and donate by registering for Hope for Hypothalamic Hamartomas at GoodDining.com. Every time you eat out - a donation will be made to hopeforhh.org at no extra cost to you!
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?
|
|
|
