Hope for Hypothalamic Hamartomas is extremely honored to have been selected by the Chan Zuckerberg Initiative to receive a $50,000 grant to be utilized for general operating support and core program support. This grant is part of CZI's Rare As One (RAO) Project and was awarded in recognition of the critical work we are doing to accelerate research, find new treatments, and one day a cure for those living with Hypothalamic Hamartoma Syndrome.

Thank you to our international Medical Advisory Board (MAB) for their tireless efforts to care for patients in the clinic and continued efforts to publish their research findings to ensure all living with Hypothalamic Hamartoma Syndrome receive the best care along the patient journey.

Special thank you to Dr. Nathan Cohen for his tireless work in achieving publication.

Congratulations and thanks to Neurosurgeon and Hope for HH Medical Advisory Board Member Hiroshi Shirozu, who has published his most recent paper on HH. Dr Shirozu’s study examines seizure outcomes for 131 HH patients who underwent stereotactic-radiosurgery at Nishi Niigata Chuo National Hospital in Chuo, Japan, with a follow-up of at least three years. Read the abstract here.

We are thrilled to share an interview by Global Genes, highlighting our very own Erica Webster! Erica is Co-Founder and President of Hope for HH. But those are just titles...she is so much more! She has such a passion for what she does and it becomes obvious when you speak to her. This is an all-volunteer organization and she does not get paid for her many many hours of work. So why does she do it? Read on and be inspired, and understand more about this amazing woman!!

What will be your impact on #GivingTuesday?