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.
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.
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
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