Nov 1 kicks off Epilepsy Awareness month
30,000 patients live with HH everyday. Help HOPE raise awareness of epilepsy, seizures and HH. Click here to find out how.
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Meet Shauna
I’m from County Clare in Ireland and I am 19 years old. I was born with a hypothalamic hamartoma. I got it removed in the Barrow Institute when I was 11 years old. My tumour wasn’t diagnosed until I was 3 or 4 years old. It was so rare that it was hard to find…
Press Release | Hope For HH London Symposium
Scientists Discuss New Approaches For Targeting And Treating Rare Brain Tumors At London Symposium BETHESDA, Md., Sept.14, 2016 /PRNewswire-iReach/ — Promising new research from scientists studying rare seizure disorders may ultimately lead to targeted drugs for potentially fatal neurological diseases in the same way that doctors are now using…….. Read more here
Potential Cause of HH Discovered!
Researchers at Columbia University, University of Melbourne and the Barrow Neurological Institute recently collaborated to exome sequence (a technique to sequence all the protein-coding genes in a genome) DNA from hypothalamic hamartoma tissue and blood. Preliminary results on 30 cases show a somatic mutation (present in brain tissue but not in blood) in over 40%…
Meet Mattias
Mattias is a truly happy 3 ½ year old boy and our only child. He has an infectious smile and a passion for life. Trains, cars and cats are some of the many things that interest him. September 22nd, 2012 Mattias was taken to the emergency room at the Children’s hospital of Philadelphia (CHOP) with…