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

04/20/2022

As parents age, their dependent adult children face an uncertain future. Medical and legal professionals offer advice for older caregivers.

03/24/2022

Applications for the JHD scholarship to join us for HIPE in Sacramento are still open, but will be closing soon! Please read all the details to see if your family qualifies and make sure and apply today!!

02/09/2022

1. What is your name? Marilu 2. Where are you from? Mexico 3. How old is your child with JHD? 17 4. How old was your child when he/she was tested for JHD? 8 years and 8 months 5. How old was your child when they started showing symptoms? 18 months 6. Who did your child inherit JHD from, mom or dad?....

02/04/2022

Dr. Peg Nopoulos spoke at Help 4 HD's Hybrid HIPE on January 15th, 2022! In this video, she goes over symptoms in JoHD and the treatments for these symptoms....

09/30/2021

Juvenile onset Huntington's Disease medications. Do you have questions? Submit them anonymously here! https://www.surveymonkey.com/r/Questions4JHDMED

09/10/2021

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

08/21/2021

Shelby Lentz talks about her new book.