From three year olds that have been newly diagnosed to teenagers playing football after surgery, hypothalamic patients in the States and abroad share their extraordinary stories and journeys in the news. Articles further describe the arrival of Dr. Jeffery Rosenfeld of RCH Melbourne, Australia to BNI to begin a week of training in the transcallosal approach for HH to the celebration of the 100th such surgery completed in the US years later.
We would like to acknowledge Emma Kane for her savvy research skills in compiling the news articles below. If you have other recent, news articles we should add to this collection, please send an email to info@hopeforhh.org.
Media in the United States
- Huge thanks to the Wendi Tipps and her entire community for making M-O-Oving Thru’ The Mud with Landon with Landon a huge success. This fundraiser for Hope for HH had over 600 participants and was fun for all. See photos and read more about it.
- ABC Nightline aired a segment on HH on June 1, 2012 following the journey of two courageous HH families.
- Check out Neurology Now interview with Lisa Soeby. Neurology Now is an award-winning magazine.
- Read Emma Kane’s testimony presented at the XX* Stereotactic & Functional Neurosurgery Conference in Marseille, France.
- In February 2012, The Cushing Neuroscience Institute at North Shore Hospital in New York proudly unveiled its new Hypothalamic Hamartoma Center headed by our very own Dr Rekate
- On 5 February 2012, the Gainsville Register published an inspirational article about Wendi Tipps, the mother of Landon, a six-year-old with HH and you can read about Landon himself who made the news in the article
- In December 2011, New York Magazine printed 50 reasons to love New York. Check out reason number 35!
- In December 2011, ABC reported on how pioneering surgeon Harold Rekate operated on Nico Bastolla with a new surgical device. The operation changed Nico’s life and led to a company being named after him
- In November 2011, Newswise reported the latest data from Gamma Knife Centres detailing the benefits of this surgery beyond seizure reduction
- October 2011, HH made primetime with a storyline on Grey’s Anatomy, Episode 7 which aired October 27,2011 titled “Put Me In Coach.” Dr. Derek Shepherd (aka Dr. McDreamey) used the transcallosal approach to operate on a girl with HH. This will help raise awareness, expedite diagnosis, and increase research! To see this episode, visit ABC’s Grey’s Anatomy site.
- October 2011, interested in the use of MRI-guided laser neurosurgery for HH – check out Dr. Daniel J. Curry’s (Texas Children’s Hospital) slide presentation.
- Barrow Neurological Institute (BNI) and Phoenix Children’s Hospital (PCH) recently announced the consolidation of pediatric neuroscience programs under the newly formed Barrow Neurological Institute at Phoenix Children’s Hospital. Maggie Bobrowitz (formerly Varland) continues to be the contact for both adults and children with HH who wish to be seen by the HH Team at either BNI or Phoenix Children’s. She can be reached at (602)-406-7585. To read more about the move go to: Phoenix Children’s
- The North Shore University Hospital and Long Island Jewish (LIJ) Medical Center recently announced the appointment of Harold Rekate, MD, as Director of the Chiari Institute, a part of the hospital’s Department of Neurosurgery. Read more at: www.chiariinstitute.com. And Hope for HH welcomes Dr. Rekate as a newly appointed member of our Medical Advisory Board too!
- National Organization of Rare Diseases (NORD) (www.rarediseases.org) recently welcomed Hope for HH as new organizational member. NORD is a network of patient advocacy organizations who represent the voice and interests of patients with rare diseases.
- In July 2011, Texas Children’s Hospital issued a press release about an exciting new breakthrough in the treatment of epilepsy: a minimally invasive laser technology that destroys lesions in the brain that cause epilepsy, including hypothalamic hamartomas.
- In July 2011, Texas Children’s Hospital story about an exciting new breakthrough in the treatment of epilepsy was picked up by CBS
- In July 2011, one year-old Zeta Brabham from South Carolina travelled by air ambulance to Phoenix Children’s Hospital for life-changing surgery
- In June 2011, nineteen year-old Zach Wagner travelled to Barrow for surgery to remove his hypothalamic hamartoma. Read how his community rallied round, and how the surgery went
- In February 2011, eleven year-old Nate Bradley used his birthday to raise money for 19 month-old HH sufferer Mason Koval.
- In December 2010, Hope For HH launches Medical Advisory Board.
- In July 2010, Rowell Family Empowerment of Northern California feature the launch of the Hope For HH organization and website.
- In May 2009, teenager Nathan Therrill played football for his school for the first time since his surgery for HH
- Edited Version: Grace Webster was three years old when she underwent surgery at BNI – the following article appeared in the New York Times on May 13 2008
- Full Version: Grace Webster was three years old when she underwent surgery at BNI – published in Cronkite Eye on Science in 2007
- In April 2008, the New York Times reported on Mary Fratianni’s struggle to keep support services for home-schooled children with disabilities, including her 11 year-old son E.J.
- On May 3, 2007, Fox News reported surgery on three-year-old Anastasia Lagalla in New York
- On April 24, 2007, Armen Hareyan wrote about BNI’s 100th HH surgery performed the previous week.
- In July 2005, teenager Anthony Celularo spoke of his new life since HH surgery 3 years previously.
- In February 2003, the Phoenix Business Journal looked forward to the arrival of Dr Jeffery Rosenfeld of Melbourne at BNI to begin a week of training in the transcallosal approach.
- 6 year-old Tiana-Mari Ortiz was anxiously awaiting her operation at BNI on Feb. 23, 2003
- Transcript: CJ Soeby’s story was featured on the NBC Dateline special on November 3, 2002.
Media in the United Kingdom
- October 10, 2016 – Boy with the cursed smile who needs £100,000 to stop devastating seizures
- October 10, 2016 – Boy with rare tumour breaks into smiles before suffering crippling seizures
- October 7, 2016 – WATCH: Cat Bites Owner’s Toes to Save Him from Seizure
- October 7, 2016 – Boy, 7, with a rare brain tumour which causes him SMILE shortly before he suffers a violent seizure
- October 6, 2016 – Rescue cat saves owner’s life by biting his toes during seizures
- October 3, 2016 – World’s first trial to assess focused ultrasound for epilepsy is underway
- August 26, 2016 – Six-year-old girl who grew pubic hair and breasts ‘robbed of her childhood’ by brain tumour
- August 25, 2016 – The girl ‘robbed of her childhood’ after she started puberty aged just SIX
- August 24, 2016 – Mum’s Desperate Attempt to Raise £200k After NHS ‘Declined’ To Fund Son’s Brain Tumour Procedure
- August 5, 2016 – New laser surgery ends 30 years of severe seizures
- April 20, 2016 – International symposium on rare epilepsy
- April 13, 2016 – Hope for HH UK: International Professional Symposium on hypothalamic hamartoma
- July 28, 2016 – Bridgewater gym flexes fundraising muscles for sick boy
- July 22, 2016 – Hartlepool steelworkers band together to help little boy get life-saving treatment
- July 13, 2016 – 10 Smoke Signals Heralding The End Of Federal Medical Marijuana Prohibition
- May 23, 2016 – Rare brain disorder causes woman to strip in public during seizures
- March 15, 2016 – Colin Ranson recovering from surgery
- February 5, 2016 – He Saved A Cat’s Life, So The Cat Returned The Favor
- January 10, 2016 – Soup’s On! Creative funding ideas
- Transcript: In February 2002, the Maben-Mead family spoke openly about what life is like when one of your children has a rare brain condition that results in unusual behaviour.
- George Maben-Mead’s surgery was reported upon in the Guardian in October 2000.
- On June 29, 2001 the BBC reported the case of British 9 year-old Sebastian Selo who had undergone surgery at RCH Melbourne.
- And finally, from the Independent in March 2008, the intriguing if quirky tale of how Mozart might help those with epilepsy, specifically gelastic epilepsy
