Happy New Year to all of our Hope for Hypothalamic Hamartomas Patients & Caregivers!
We realize everyone is busy this time of year, but we are asking you to please take time to enroll in the Rare Epilepsy Network (REN), which is a very important research study that the Hope for HH is participating in with the Epilepsy Foundation. As you will recall, EF and 10 other rare epilepsy groups were awarded $1M grant to establish a registry to better understand HH and other rare epilepsies.
We have committed to enrolling a large number of families and we are below our target. The Epilepsy Foundation will be applying for 3 more years of funding to continue the REN and we need to quickly get our number of registered patients up.
Hope for HH set a goal of 110 patients registered. Only 26 have signed up so far. Please help us meet goals for HH by signing up Today. The survey will take just 45 minutes max. It is broken up into sections and you can complete it over several days. No medical records are required, although you will be asked if you have EEG or MRI reports that can be uploaded at a later date. All patients – in the US and international – can participate. The survey can be completed by caregivers and/or patients.
The REN will provide us with much needed data to better understand hypothalamic hamartomas treatment, outcomes and quality of life.
You may access the surveys through the following link: https://ren.rti.org/ Enroll.
Finally – if you have ANY reservations about completing the survey, need help, or have questions, please email: email@example.com or call me at 240-205-4807! We want to remove any barriers to the HH community full participation! And if you have completed the survey, give a shout out on Facebook to let others know you have done your share!
Best Wishes for the New Year!
Hope for Hypothalamic Board of Directors
Lisa, Erica, Emma, Julie, Wendi & Ilene
by Sue Jackson on November 15, 2014
Faith has been on Zonisamide for a year, we have slowly increased it to the dosage she is on now. 100 mg twice a day. With room for still some more increase.
In seven years this is the best Faith has ever been with her seizures and moods. As i’m writing this she has only had one small gelastic/partial seizure. This is amazing for Faith as her seizure control has never been the best.
We initially started Zonisamide because her seizure pattern changed to an extent that was quite unbearable for her and us. They had become quite long lasting up to 3-5 minutes and stronger in nature. she had also become quite postictal after her seizures sleeping anywhere up to 20-30 minutes after the longer ones.
We were finding that she would have a good spell with each increase initially of about three weeks and then the bigger seizures would start to creep back in. Though with this last increase the good spell seems to be lasting longer which is amazing. I think of it as our wonder drug and just hope that this increase is the one that will finally put […]
Continue reading Making Progress and Call to Action for Laser Ablation Petition
by Angela Donn on November 12, 2014
Despite Eli’s diagnosis, two brain surgeries four months apart 1500 miles from home, and daily seizures, the ketogenic diet has caused us the most stress!
The diet started off with a three day hospital stay at Johns Hopkins Keto Clinic. Here we had classes to help us learn about the diet and how to prepare food. It is hard at first because it goes against conventional thinking. The Ketogenic diet essentially is 92% of calories from fat. So Eli’s first food after fasting for 24 hours was about four bites of chicken, a third of a stick of butter, two pieces of broccoli, and heavy whipping cream. They served it to us and we were like, what are we supposed to do with this butter? So he got mouthfuls of butter with a little chicken. We then knew we were in for something…
So it is really hard to get a handle on the diet which is a 4:1 ratio of four fats for every one protein/carb. We have spent hours upon hours trying to convert a few recipes to get the right ratio within our calorie allotment. We have to measure every […]
Continue reading Eli and the Ketogenic Diet
Hope for Hypothalamic Hamartomas is pleased to announce the exciting news that you’ve been hearing about for the past year. Hope for Hypothalamic Hamartomas, The Epilepsy Foundation and nine other rare epilepsy organizations were awarded a one million dollar grant to launch a rare epilepsy registry!! After months of hard work by the Registry team who have developed a comprehensive questionnaire, the time has come to invite participation by individuals and families with hypothalamic hamartomas.
We would like to challenge every HH patient and caregiver to complete the REN survey so we can better understand what causes HH and how to cure it! Click on the logo link below to enroll and participate in this research.
To encourage even more participation, we challenge each person who completes the questionnaire to challenge three more individuals and post your challenge on the Hope for Hypothalamic Hamartomas Facebook Page.
Click the REN logo below to go to the questionnaire and get started.
And here’s Wendi’s challenge.
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.
This video does not work in Internet Explorer, so please use Firefox or Chrome to view the video.
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 […]
Continue reading Participate in the Rare Epilepsy Network Registry