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…
Listen to the most up-to-date HH research from international experts from the 3rd International Symposium on HH in London Sept. 2016. The link for this will be to the playlist: 3rd International Hope For HH 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
I am 20 years old and I live in Dublin California. I had brain surgery when I was 8 years old at Barrow Institute in Phoenix AZ. I had my hypothalamic hamartoma removed that time. The last seizure I had was on the way to the airport to go to Phoenix for my surgery. I…
Our little Jack was born on April 11, 2014, and came home from Hoboken Hospital with me the next evening to spend his first Saturday night meeting his big sister, Julia, who was almost two. He was perfectly ordinary and had no issues at all guzzling down his bottles and enjoying the attention. However, within…
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%…
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…
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%…
Sue Jackson, Secretary UK, Wrexham Sue’s daughter Faith, was diagnosed during a routine antenatal scan, however, her seizures were not recognised until she was three months old. During this time she was continually in and out of status, due to the amount of seizure activity she was experiencing. Faith had surgery at the age…
Symptoms and effects of hypothalamic hamartomas vary from case to case. For some management of epilepsy is the overriding concern, others have endocrine issues to address, for many the legacy of the epileptic seizures can include developmental delay, behavioural issues, pervasive developmental disorders, ADHD and ASD. We have tried to include within this section a…