In honor of International Epilepsy Day, an event created to promote epilepsy awareness in more than 120 countries, Hope for HH would like to highlight and thank our own international support community!
In the last 5 years the Hope for HH Medical Advisory Board (MAB) has grown from a mostly US based group of experienced HH neurologists and neurosurgeons to an even more diverse group of medical professionals that we are fortunate to be able to collaborate with today. Our MAB is even more internationally distributed, includes several more specialties, and has embraced an “out of the box” type of approach to solving this complex disorder. They all are very enthusiastic about helping us focus on research, expanding new treatments around the world, and solving the genetic puzzle. A huge THANK YOU to our incredible MAB!
Also, in the last year, Hope for HH has been excited to have our UK affiliate come along side to help educate and support families, as well as go out into hospitals and clinics with presentations to educate frontline professionals. Carrie Fulcher and Sue Jackson have a great team of HH parents that support their efforts and the UK HH community. We are thankful they are making such a huge difference abroad! Kudos to Hope for HH UK!
We would also like to give a shout out to Joan Lorne Peltier who lives in France and has started an HH Facebook page for French speaking individuals. Joan lives in France and hopes to spread the word about HH treatments in France and elsewhere in Europe. If you would like to join her page or support her efforts, go to: L’Espoir: Hamartome Hypothalamique France.
Many HH families, when they receive a diagnosis, are told it is a rare disorder and they will probably never meet another patient with HH. However, through the power of social media, the internet, and the efforts of organizations like Hope for HH – families are connecting all the time – all over the world. We are finding each other in the same country, state, and even in the same town!
So today, February 13th, International Epilepsy Day, we encourage everyone to take a selfie or a picture showing how you are spending your day! Share it with your community and the Hope for HH Facebook Page (email to firstname.lastname@example.org) and let’s educate, empower, and connect – in all languages! #EpilepsyDay #HopeforHH