Help 4 JHD

02/13/2025

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.

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'.

07/13/2023

I’m gathering silent auction items for our education day in Michigan in August. If you have anything to donate, I sure would appreciate it. Gift cards are probably easiest since they’re pretty universal, but gift baskets, books, music, art, etc., that I can transport in my luggage would also be appreciated. Money raised will go into our holiday relief fund at Help 4 HD. Thank you so much!!!

04/14/2023

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.

Please tune in to hear Ashely speak about her diagnosis of JoHD. She talks about dating, diagnosis, loss of independence, faith, and more.

07/09/2022

Do you or your loved one have a recipe for a favorite dessert, side dish, main course, or snack that you’d like to share? Tell us about it!!! SEND US YOUR RECIPES! Help 4 HD is creating an HD Cookbook and we want to fill this book with recipes from our amazing community! Submit your recipe (ANY RECIPE) by the AUGUST 31st deadline: https://www.help4hd.org/hd-cookbook