As we near the close of 2022 we would like to express our deepest gratitude for all the ways you support Hope for Hypothalamic Hamartomas and our mission to positively impact the future for those living with this rare brain tumor and complex syndrome.
With the generosity of our donors and volunteers we've been able to stay true to our mission and have accomplished some extraordinary things in 2022.
A few of our 2022 Highlights
- Hope for HH awarded a $10,000 research grant in collaboration with AES (American Epilepsy Society) focused on developing a mouse model for HH.
- Hosted the 5th International Professional HH Symposium in Calgary with Dr. Julia Jacobs-LeVan. This 2-day event focused on HH specific topics and discussions on how to improve the entire lifespan of those with HH with 17 guest speakers from around the world presenting to an addition group of nearly 30 HH experts and young investigators. An additional professional education day was included.
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Hosted a professional educational webinar 'Hypothalamic Hamartoma: Diagnosis and Treatment of a Lifelong Syndrome' with Dr. Felippe Borlot for the Brazilian Child Neurology Society. This included 6 speakers and an audience of 66 pediatric neurologists and neurosurgeons.
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Presented at the EpiCARE Annual General Meeting held in Lyon, France. EpiCARE is the European Reference Network (ERN) for rare and complex epilepsies.
- Held our 2nd International Meet & Greets to providing our community members the ability to connect through live, interactive video conferencing. We held four virtual events which were divided by age group to allow families at similar points on the HH journey. These events continue to provide an opportunity for many to meet and form lasting friendships with others that truly understand!
- Attend the 2022 PAME (Partners Against Mortality in Epilepsy) Family and Scientific Conference.
As you plan your year-end giving we hope you will consider a donation to HOPE. Your donations directly impact HH patients and their families by allowing us to continue our critical work and fund our initiatives and programs.
Wishing you a Happy New Year,
Hope for HH Board of Directors
