Share Your Loved One's Story

Individual DLG4 stories help us raise awareness and advocate for funding and research. They also help newly diagnosed families feel less alone in the world of rare diseases. Please consider sharing your story and making a difference in the lives of families affected by DLG4 Synaptopathy. Pictures and videos, even without telling your story, are immensely helpful to accomplishing our mission of raising awareness, funding research and supporting our community.

First name

Last name

Email

What is the first name of the individual impacted by DLG4 SHINE?

Do we have permission to use the following information/images for awareness, fundraising, and media purposes?

Yes

No

Upload Pictures or Videos

Please attach any photos of you (or your child) that can be used for social media/awareness/fundraising purposes below as described in the media release. You are limited to 10 images. Make sure no one else is in the background. Try to include a variety of photos, including such things ranging from your child doing a favorite activity to a hospital image (if applicable).

Could you please give us a brief paragraph of how life is with your child.

Could you list some favorite items? Favorite Food, Favorite Activity, Favorite Shows, Best Friend, Favorite Song?

What are some of the biggest challenges with your child? Example: Anxiety, Epilepsy, meltdowns etc.

I hereby consent to the use by DLG4 SHINE Foundation of all photographs, videotape, or other images or recordings that I have provided for all purposes, in any and all media including the Internet, without limitation, including promotion, solicitation, advertising or trade. I am fully aware that my likeness may appear in materials available publicly outside of the DLG4 community.

DLG4 SHINE Step-by Step Guide

We've created this step-by-step guide to help newly diagnosed DLG4 SHINE families navigate through the available resources and important process of registration. Start the process or pick-up where you left of by clicking on a step below.