DLG4 Synaptopathy - SHINE Syndrome

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

Every milestone in DLG4 SHINE research brings us closer to a future where families no longer face this journey alone.Our...
11/06/2025

Every milestone in DLG4 SHINE research brings us closer to a future where families no longer face this journey alone.

Our goals are clear:
✔️ Advance science that could restore critical brain function and improve outcomes.
✔️ Build programs that connect families with resources, expertise, and each other.
✔️ Create hope by turning today’s challenges into tomorrow’s breakthroughs.

For families impacted by DLG4 SHINE Syndrome, these goals aren’t abstract, they mean fewer challenges, stronger voices, and brighter futures.

Together, we can transform possibility into progress. Join us in driving change: https://www.dlg4shine.org/giving-tuesday

We’re launching our End-of-Year Fundraising Campaign! Every dollar supports DLG4 SHINE Syndrome research and community g...
11/03/2025

We’re launching our End-of-Year Fundraising Campaign! Every dollar supports DLG4 SHINE Syndrome research and community gatherings to help families access vital resources. Let’s fund the future together!

Donate or start a fundraiser today at https://www.dlg4shine.org/giving-tuesday

Today's SHINEing Star is adorable Daniella who has a sweet tooth and a sweeter face 🤗Read more about Daniella and her pe...
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.

DLG4-related synaptopathy now has an ICD-10 code—effective today!💜Families: share this with all your doctors.✔️Clinician...
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.

🎉 Big News for the DLG4 SHINE Community! 🎉We’re proud to announce that DLG4-related Synaptopathy has officially been ass...
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. 💜💛🖤

Today's SHINEing Star is sweet Alex who's a great traveler because he loves anything with wheels and even anything that ...
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

NEW MERCH DROP! Check out the DLG4 SHINE store for new, fun designs and our classic ones! All items are “at cost” to kee...
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/

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

Address

P. O. Box 1273
Pleasant Grove, UT
84062

Telephone

+16132901982

Website

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