This has been an exciting week for the HH community as the television show, The Doctors, featured two families who have children with HH and their experiences with laser ablation surgery. The video clip also includes Dr. Nakaji who performed the laser ablation surgery on both of these individuals and his explanation of the location of the hypothalamic hamartoma as well as how the surgery works to remove the HH.
And if you missed the show, there are clips that are on The Doctors website which are available for viewing. Please click on the link below to see the full program. Or click on the individual links to view individual segments of the program. A brief 30 second commercial is shown before the individual clips.
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Hypothalamic Hamartoma as featured on The Doctors, week of September 9, 2014
Dr. Nakaji http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors History of Patients http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors Patients in Studio http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors
The following post appeared on the Barrow Hypothalamic Hamartoma blog on July 30.
In a statement provided by Bill Hoffman, CEO of Visualase, “The transaction with Medtronic is critical to ensure more patients have access to our beneficial technology. We are proud of the MRI-guided laser ablation technology and other products we have developed and their impact on the well-being of patients.”
The Barrow HH team will continue to work with this company to provide minimally invasive treatment options for our patients as we have done for the last two years. Our team is excited about the possibilities this acquisition can offer.
Maggie Bobrowitz, RN, MBA Neuroscience Program Coordinator Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center
We are delighted to share that one of our founding members and member of the Board of Directors, Ilene Miller, has been nominated as a 2014 Rare Champion of Hope. For more information, you can read about this great honor here at the Global Genes Project. Ilene was nominated for her work as a Collaborator in Advocacy for Hope for Hypothalamic Hamartomas.
Let’s all extend our hearty congratulations to Ilene.
The Rare Epilepsy Network Registry, funded by PCORI, will be opening for enrollment in about a month, and we will need as many families as possible to participate in order to make this successful and useful for us all. What is the Rare Epilepsy Network REGISTRY?
The Rare Epilepsy Registry will collect medical information from patients with HH that will be used for patient care and research. HopeforHH.org is fortunate to be involved in the Rare Epilepsy Network (REN). This registry is unique in that it is patient-driven and patient centered. That means that all of us will be able to participate. We can directly improve the care for patients with HH by providing as much information as possible. Please take a moment to read about it and consider participating so that you can help all of those living with HH and other Rare Epilepsies.
Note: Because this is medical research, all participants are required to give informed consent and may stop participating at any time in accordance with Institutional Review Board requirements. All information provided will be de-identified and protected by the REN.
What is the Rare Epilepsy Network?
The Rare Epilepsy Network is a collaboration between the Epilepsy Foundation, Research Triangle Institute (RTI) International, Columbia University, and [...]
Continue reading Participate in the Rare Epilepsy Network Registry
The following post was published on the Barrow Hypothalamic Hamartoma blog by Maggie Bobrowitz on May 30, 2014. We want to share with you the difference one of our community has made in all our lives.
Compassion has been defined as the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering. Many of us feel compelled to help our family and friends when we see them work through challenges in their lives. There are others who extend this act of kindness to those outside of their inner circle.
A couple of years ago I met a woman who continues to serve people she will never meet. She is the mother of a young boy who is recovering from his second HH surgery. Rather than focus on what others can do for her son, she reaches out to families coming to Barrow for treatment and offer her support.
Kathy builds gift bags full of snacks, reading materials, and warm fuzzy slippers for HH patients and their families. I pass them on to the families to maintain their privacy. The bags aren’t just full of comfort food & other goodies. They send a message of [...]
Continue reading A Compassionate Mother
Just a quick note to let subscribers know that we had an instance of spam being sent to our subscribers. This seems to have occurred and has been corrected at the level of the website hosting service. We use the best and most recommended spam filters in an effort to prevent this sort of nuisance. We apologize for any inconvenience or inappropriate content.
Sincere apologies to all.