“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through. Throughout my treatment I can…
EpiCARE News from Hope for HH UK Annual General Meeting (AGM) EpiCARE is one of 24 European Reference Networks established by the EU in 2017-18. ERNs operate as virtual networks involving specialist healthcare providers across Europe. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration…
What is Self-Care? Dear Caregivers, “Self-care is a continuous act of choosing to live your best life, no matter the circumstances.” I am not sure where I first read this, or who said it, but I wrote it down, and it keeps resonating in me. The definition of “self” is blurry these days. We are…
This past fall I had the sincere pleasure of being nominated as a finalist for the March of Dimes Heroines of Washington Award. I was one of several women recognized for a commitment to serving the needs of others and giving back to the broader community while juggling a career, family, and day-to-day professional responsibilities.…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
Olá, meu nome é Luis Paulo e eu sou o pai da pequena Sofia. Estou escrevendo este blog no Hope For HH e compartilho um pouco da história de HH da Sofia. Espero que isso ajude a divulgar informações sobre hamartomas hipotalâmicos e a organização e site Hope For HH. Sofia sofria de ataques de…
[see translation here] Hello, my name is Luis Paulo and I’m the father of the little Sofia. I’m writing this blog on Hope For HH share a little of Sofia’s HH story. I’m hoping this will help spread information about hypothalamic hamartomas and the Hope For HH organization and website. Sofia suffered from bouts of…
On 16 March 2016 the EU launched its first call for interest from medical and research centres wanting to apply to create and join a European Reference Network (ERN). An ERN is a network of centres of expertise on rare diseases, each one endorsed nationally by their country of affiliation as a centre of…
This year Hope for HH is celebrating its 10th Anniversary! Over the next year, we look forward to sharing some of our greatest achievements in the last decade and developing our vision for the next 10 years! As part of our vision for 2019, we will be focusing on 3 C’s. They are: Comorbidities, Community…