Zeta Brabham & Brothers Thank You!
In just 2 years, your stories, time, compassion, and donations have helped countless children and adults living with hypothalamic hamartomas (HH) - a rare brain tumor and seizure disorder.
Still, far too many patients experience multiple misdiagnoses, unnecessary treatments, expense, and stress until they are correctly diagnosed. Even once diagnosed, they spend years finding proper care and managing the life long symptoms and side effects of HH including gelastic and other seizures; rages; hypothalamic obesity; learning disabilities; unemployment etc. As we reflect on 2011, we want to say thanks - celebrate what we have done - and ask you to continue to support us in 2012.
We need you now more than ever- many ways to help... |
|
2011: A Year of HH Headlines
For a condition that affects only one in 200,000 people, 2011 was a year of HH headlines:
- Texas Children's Hospital pioneered the use of a laser to treat 3 HH patients which was reported as breaking news in national media
- Popular tv show Grey's Anatomy included a storyline about an HH patient. Watch Put Me In Coach which aired Oct. 27
- Read more local and national news stories about HH families at right
|
Making A Difference: One Family at a Time
In the beginning when we found out that she had a HH tumor, we were told by a doctor that she only had 4 months to live and to take her home until God calls her home. Well, 9 years later Jordan is still with us. One night her mom was on the computer and googled HH and this is how she found hopeforhh.org which has truly helped the family to understand what is going on with Jordan. We are so thankful for all of the information and encouraging words that we have received. For so long we have been in the dark about HH and it has been a blessing to join this group. There have been so many unanswered questions answered because of the emails that we receive from the web site. - The Allens
|
|
Partnering to Raise Awareness
We can't raise awareness of HH alone! So we have given testimony, attended conferences, and partnered with key organizations. For our patients, awareness equals earlier recognition of the symptoms, faster diagnosis, new and improved treatments, and ultimately cure. Thanks to all our partners for their web links, outreach, and support.
American Epilepsy Society
Vision 20/20 - Epilepsy Task Force |
|
HH: By The Numbers
149
Families on the HH Community Forum
(more than doubled in 2011)
50
(walkers at National Walk for Epilepsy)
7
Medical Advisory Board Members
(special thanks to Chairman - Dr. Kerrigan and all the MAB for their tireless advocacy)
4
HH Board of Directors
(FT HH caregivers; dedicated volunteers)
minute - the time it takes to make a difference in the lives of HH patients....
|
|
More to do and we need you!
Until there is a cure, we will do our best to support every person touched by HH.
Can we can count on you NOW and in 2012?
Please Share, Walk, Volunteer, and Donate... help us help so many!
Happy 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 |
 L to R: Lisa Soeby, Ilene Miller, Dr. Helen Cross & Dr. Jack Kerrigan at AES 2010 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
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
|
|
Thanks to Our
Donors & Walkers!
(and so many that do it all)
Farnoush & Siamak Aalemansour - Ami & Lou Aronson - Barbara & Morris Askenazi - Wrenn Baldwin - BARROWS NEUROLOGICAL INSTITUTE - BERNSTEIN FAMILY FOUNDATION - Dr. Jason & Alissa Birnbaum - Sara & Karan Bhatia - Armen & Mary Boyajian - Vanessa Breth - Adam & Amy Buckley - Amy & Jason Bulson - Dawn Cerven - Kimberly Chen - Angie & Ryan Child - Barry & Mary Cohen - Rhonda Cutler - Suzanne & Bill Crump - Page & David Dekker - Dr. Craig & Justyna Della Valle - Colonel James & Marilyn Dunn - Anne Earne - Steven Fabrizio & Sara Love - Larry & Candy Familant - Shelley & David Fogel - Barbara & Jerry Freundlich - Scott & Lisa Friedlander - Elisabeth Frye - Linda & Alan Geldin - The Honorable Judge Allan & Susan Goodman - James & Yuko Grady - Dr. Nima & Jamie Hendi - Susan & Vince Howard - Julie Donovan & Peter Jenkins - Barristers Emma & Adam Kane - Philip & Leslie Katz - Kathy & Bob Kloss - Wendy & Tom Kuhn - Dr. Craig & Ilene Miller - Joel & Lola Miller - David & Amanda Morris - Francine Morris - Alan & Frani Penn - Maxine & Jim Perlmutter - Teri Nover - Rachel Nover - Cathy Pitts - Dr. Brian & Lara Polner - Clarence Potter - Larry & Laura Prosen - Dana & Dan Rice - Larry Roper - Perry & Michael Rosen - Brian & Shana Rosen - Elizabeth Vogel & John Schmidt - Robin Seitzman - Alexa and Larry Smith - Lisa & John Soeby - Emily & Jay Solomon - Susan & Bruce Stein - Robyn Stoller - Neil & Denise Swidey - Kim Thiboldeaux - Dr. Steven & Heather Tuck - Cecily & Rob Uhlfelder - VISUALASE INC. - Julie & Mox Weber - Erica & Perry Webster - The Honorable Judge Paul & Bunny Weinstein - Dr. Joseph & Janet Zuckerman
Special Thanks to
Extraordinary Volunteers
for their Donation of
Time & Advice
Marjorie Busby, Mike Conroy, Maggie Bobrowitz, Polly Janz and the law firms of Greenberg Traurig, LLP and K&L Gates, LLP - especially attorneys Jeremy D. Zangara, Harry Friedman, Tim Bass, Lawrence Prosen, Bruce Nielson, Christopher Adkins, and Viren Soni.
Kudos to Our
Everyday HH Heroes!
Emma Kane for outreach internationally to patients & professionals, Ilene Miller for national advocacy and policy outreach and enewsletters, Lisa Soeby for countless hours spent supporting & comforting patients; and Erica Webster for exceptional design work on all HH materials, our wonderful website, and forum support.
|
|
