About Hope for HH UK
Hypothalamic hamartoma is a rare congenital brain lesion that causes epileptic encephalopathy. Symptoms include laughing seizures leading to severe cognitive and behavioural problems similar to autism (and so HH is sometimes misdiagnosed as autism). Our small charity is entirely volunteer run - the trustees comprise HH sufferers and parents determined to increase awareness of, and therefore accurate diagnosis and proper treatment of, this complex syndrome, which is often missed by paediatricians and radiologists. Our personal outcomes have been varied, but each of us remains committed to improving detection rates and finding a cure. Every penny raised is spent on research or patient support. The next generation is already benefitting, with children starting to achieve some exceptional outcomes through new technologies supported by us. Our most important achievement is to have facilitated communication between brilliant but disparate experts from all corners of the world; they are now working together - including as part of our Medical Advisory Board - better to understand and treat this devastating syndrome. Laser Ablation Surgery, facilitated by Hope for HH, recently commenced in Great Ormond Street Hospital, bringing more hope to UK sufferers of this and other focal epilepsies. We are committed to genetic research projects to understand more about aetiology, and hosted our fifth international symposium in Sept 2022. We depend entirely on your support - thank you!
www.hopeforhh.org
enott@hopeforhh.org
Hope for HH UK Registered charity number 1164565
