DLG4 Synaptopathy - SHINE Syndrome

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DLG4 Synaptopathy - SHINE Syndrome

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from DLG4 Synaptopathy - SHINE Syndrome, Medical and health, P. O. Box 1273, Pleasant Grove, UT.

DLG4 SHINE Foundation supports families, funds PSD-95 research, and raises awareness of SHINE Syndrome—a rare disorder caused by DLG4 gene mutations affecting brain development.
*Managed by the board of the DLG4 SHINE Foundation

10/28/2025

Today's SHINEing Star is adorable Daniella who has a sweet tooth and a sweeter face 🤗
Read more about Daniella and her peers on our website at https://www.dlg4shine.org/rare-stars

Image description: A little girl on a couch is shyly and sweetly smiling at the camera.
Text reads: DLG4 SHINEing Star; Favourite foods: Eggs and shortbread cookies; Favourite activities: Playing with toddler toys like shape sorters, ring stackers or building blocks; Favourite TV Shows: Miss Rachel; Favourite people: Her Parents and big sister; Biggest challenges: Communication and Sleep Disturbances leading to only 1-2 hours of sleep on some nights; Daniella, age 2, Ohio, USA.

10/13/2025

Today's DLG4 SHINEing Star is sweet Manon who likes music, stories, and colouring, but also like many of her peers is very social and very empathetic!
Read more about Manon and her peers on our website at https://www.dlg4shine.org/rare-stars

Image description: A teenage girl with glasses is standing outdoors, wearing jeans and a graphic sweatshirt and smiling at the camera.
Text reads: DLG4 SHINEing Star; Favourite foods: Pizza; Favourite activities: Listening to music, coloring Mandalas, seeing people and someone reading books to her; Favourite TV Shows: Super Nanny, Camping Paradise; Favourite people: Her Dad; Biggest challenges: Managing her emotions when she is frustrated. Also does not like outside noises and insects buzzing; Manon, Age 17, France

10/06/2025

Registering for a Clinical Research ID (CRID) is a powerful step. It connects your data across studies, speeds up research, and protects your privacy.

Need help registering? Contact info@dlg4shine.org.

We’re here to help our DLG4 SHINE families.💜🖤💛

10/01/2025

DLG4-related synaptopathy now has an ICD-10 code—effective today!

💜Families: share this with all your doctors.
✔️Clinicians: please update patient charts to reflect this diagnosis.

09/22/2025

🎉 Big News for the DLG4 SHINE Community! 🎉
We’re proud to announce that DLG4-related Synaptopathy has officially been assigned an ICD code—a significant milestone that brings visibility, validation, and hope to patients, families, and researchers worldwide.

What’s an ICD code?
Think of it like a universal medical “barcode.” ICD stands for International Classification of Diseases—a system used by doctors, hospitals, and insurers to track diagnoses, treatments, and outcomes. Until now, DLG4 SHINE was invisible in this system. That meant no consistent way to document cases, no way to measure impact, and limited access to care.

Why it matters:
✔️ Enables accurate diagnosis and tracking
✔️ Opens doors to insurance coverage and reimbursement
✔️ Supports research, clinical trials, and funding
✔️ Validates the lived experience of patients and caregivers
✔️ Helps hospitals and providers recognize and treat the condition

This is more than a code—it’s a step toward equity, recognition, and better care. Thank you to every advocate, clinician, and policymaker who helped make this possible. The journey continues, but today, we celebrate progress. 💜💛🖤

09/22/2025

Today's SHINEing Star is sweet Alex who's a great traveler because he loves anything with wheels and even anything that moves!
Read more about Alex and his peers on our website at https://www.dlg4shine.org/rare-stars

Image description: a young boy wearing a grey t-shirt with a truck soon it is standing in a fruit orchard and smiling at the camera
Text reads: DLG4 SHINEing Star; Favourite foods: Pretzels, chicken nuggets, strawberries and blueberries; Favourite activities: Watching cars drive by, playing with his ATV truck and push bike; Favourite TV Shows: Miss Rachel; Favourite people: His big sister; Biggest challenges: Controlling ESES, communication, and anxiety; Alex, Age 6, New Hampshire, USA

09/11/2025

NEW MERCH DROP!

Check out the DLG4 SHINE store for new, fun designs and our classic ones!

All items are “at cost” to keep prices as low as possible for our community. The foundation does not receive any proceeds from these items.

https://www.bonfire.com/store/dlg4-shine-foundation/

09/08/2025

The message from today's beautiful SHINEing Star Louane couldn't be any clearer: she was born to SHINE!! ✨

Image description: a teenage girl with long hair is smiling. She's wearing a navy long sleeve shirt with the words "Born to shine" written in silver letter.
Text reads: DLG4 SHINEing Star; Favourite foods: Pasta and strawberries; Favourite activities: being with animals (her cat Cookie), seeing her friends, and taking a stroll; Favourite shows: the Netflix series “Go! Live Your Way” and Disney movies; Favourite people: Her sister Sofia and her cousin Alya; Biggest challenges: controling her emotions and anxiety; Louane, Age 15; France
The same same image mis repeated with the text in French

09/01/2025

🔍🧬 Every piece of information matters in rare disease research.

That’s why we’re proud to team up with our trusted partners at Simons Searchlight to spread the word about the Clinical Research ID (CRID).

A CRID is a simple way to link your data across different studies—helping researchers see the bigger picture and make meaningful advances faster. This connection is especially valuable for families with SHINE Syndrome.

Your privacy and security always come first. CRID data are encrypted, stored on secure servers, and your personal information will never be shared or sold.

✅ Creating your CRID is simple:

Visit TheCRID.org
Make a unique 8-character identifier
Share with your providers or studies

Add your CRID to your Simons Searchlight account at www.SimonsSearchlight.org.

Thank you for contributing to !

08/27/2025

Brag post alert!
We wanted to highlight the incredible contribution of our very own Sabrina Merchant during the conference.
Thanks to her expertise, connections, and generosity, she made it possible to organize and coordinate the addition of a large quantity and variety of bio samples to our repository for imminent and future research projects.
We couldn’t have done it without her and we are extremely grateful for her dedication!

See her board member profile at https://www.dlg4shine.org/dlg4-shine-board/sabrina-merchant%2C-md

Address

P. O. Box 1273
Pleasant Grove, UT
84062

Telephone

+16132901982

Website

http://dlg4shine.org/

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