Rare Epilepsies Network Registry

Read more about the Rare Epilepsies Network (REN) Registry and become a participant.

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Medtronic Acquires Visualase

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.

Regards,

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

2014 Rare Champions of Hope Nominee

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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.

 

 

Participate in the Rare Epilepsy Network Registry

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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 [...]

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Accepting the Challenge

2014-06 Eli

Its been over a year since our diagnosis of HH. I felt like everything happened so quickly and before we knew it Eli was having laser ablation surgery. And soon after he was having it again. And now we wait to see what develops.

After talking with the other HH families who so bravely tried this new surgery to ablate the tumor, we were as confident as we could be with our decision to have the surgery. I feel they expressed such success and happiness and that their children were “cured.” I knew HH was a lifetime challenge for most who came before Eli, but with the new ablation surgery it seemed to have such limited complications and astounding success. And the Texas Children’s doctors also expressed awesome results. So I was optimistic Eli would have a similar outcome. He has not.

We had two months of marked positive improvements and then, out of nowhere, a seizure. Then more. Tonic clonics, myoclonics, partial complex, and absence seizures. For the past six months we are always in a state of trying to find a drug combination that works. We always are weening on/off medications when a new kind seizure appears, then [...]

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A Compassionate Mother

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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 [...]

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Special Bonds

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Sunday is Mother’s Day. I apologize ahead of time, because this will be a discussion of Mothers – mostly because that is what I know. Someone else will have to step up for Father’s Day and tell their story, just saying. Sunday for the Soebys will be spent in Sedona with our great friends, Maggie and Pete Bobrowitz. Most of you know Maggie as the HH Program Coordinator at Barrow Neurological Institute in Phoenix, AZ. But over the years, I have gotten to know her as so much more. She is a very special friend and also a very good Mom. She has helped me deal with the medical needs of my son, but she has also shared her stories of the trials and tribulations of raising what I affectionately call a “neuro-normal” child. I think at times she would call her daughter anything but “normal” but that is what makes our Mommy bond so great! Because you see, no matter what the situation, Mom’s carry a heavy burden. We all want to make life for our kids – well, spectacular! And at times, that can be impossible. Sometimes we do our very best to simply get through the day…let [...]

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Apologies for unauthorized email to subscribers

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.

New HH Support Group

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Reposted from the Barrow Hypothalamic Hamartoma blog:

The Hypothalamic Hamartoma Center at Barrow is partnering with Hope for Hypothalamic Hamartoma to establish a local support group in Arizona. We will begin hosting social gatherings at St. Joseph’s Hospital & Phoenix Children’s Hospital to offer a centralized location and have convenient access to the HH experts.

The get-togethers will be fashioned around the needs of those affected by HH in Arizona. That means hosting formal or informal events as requested by the attendees. From time to time we will invite our HH experts to talk about research on the horizon or other compelling HH topics as desired by the group. Please contact me for more information.

Regards,

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

 

Lots of Updates on Ezri

2014-04 Ezri

This year has really flown by for our entire family. Up until now, Ezri has done fantastically in her first grade class. This is not to say she’s functioning at a ‘normal’ level, but she continues to make progress with her school work and grow socially. School is still hard, but she is reading simple books (she’s actually reading! and before Christmas was tested as knowing all her kindergarten sight words), is able to add single digit numbers and can (mostly) count to 100 (math is always hard). Considering at the start of kindergarten she could barely count to 10 on a good day, we can’t complain. She continues to say all sorts of funny things that remind of just how much is really going on inside that head of hers and how much she is so often unable to communicate to us. She also finishes our sentences all the time and when we forget words, knows them in an instant, and I find it so amusing as SHE’s the one with the speech delay.

As for seizures and emotional disturbances/episodes, she has been pretty stable. There have even been times when I have even wondered if her staring spells [...]

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Running for Rare Diseases

2014-04-21 Grace Webster

The Boston Marathon will be run on Monday, April 21, 2014. LOUIS RIVOIRARD will run the Boston Marathon in Grace Katherine Webster’s memory(12-24-03 to 12-11-11). His goal is to increase awareness of Rare Genetic Disorders and to raise funds to support early diagnosis initiatives by the National Organization for Rare Disorders (NORD).

Grace was diagnosed with HH in April of 2005 when she was not quite two years old. She had surgery in 2007. She and her family have been the inspiration and support for the entire community of children, adults, and families who are living with HH every day. You can read more about Grace at the HopeforHH.org families page.

Grace Katherine Webster