Help 4 JHD

We haven't posted in here for so long. We apologize for that. We wanted to let everyone know there is a survey study going on out of John Hopkins looking at seizures in JHD. The PI of the study is Dr. Lammert. She is a pediatric neurologist that is an expert in pediatric seizures. She is trying to understand seizures in JHD so they can come up with a better care model for our children impacted by JHD that are suffering from seizures. If your child is living or lived with JHD and seizures and you would like to participate and help here is the direct link. We appreciate any input for a better understanding of this terrible symptom our children have to endure. We need a greater understanding and better care.

Epilepsy in Huntington's Disease - Survey This page contains important information about the study. Please read these instructions and fill out the survey on behalf of your child to the best of your knowledge. If you wish to go directly to the survey, please scroll down and click on 'Next Page'.

We want to thank Ashley for being brave enough to come on and talk about her new diagnosis of JoHD. It is a heartbreaking episode, but she also, at the end of the show, shows how resilient and strong she truly is.

I am an adult that was diagnosed with JoHD Please tune in to hear Ashely speak about her diagnosis of JoHD. She talks about dating, diagnosis, loss of independence, faith, and more.

Ask Autumn: Her Summer Tune in for an episode of Ask Autumn. She talks to us all about her exciting summer! ...