DLG4 Synaptopathy - SHINE Syndrome

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DLG4 Synaptopathy - SHINE Syndrome

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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

08/17/2026

Meet Joelle, today’s DLG4 SHINEing star, who loves reading, art, pasta, and who’s smile is very contagious. Let’s all take a page off her book, grab a shoulder buddy, and enjoy life to its fullest!
You can read more about our SHINEing Stars on our website at https://www.dlg4shine.org/rare-stars

Image description: A teenage girl with a stitch toy on her shoulder is looking and smiling at the camera
Text reads: DLG4 SHINEing Star; Favourite foods: Pasta, Favourite activities: Reading and Art, Favourite TV Shows: K Pop Demon Hunters, Favourite people: Her best friend Emma, Biggest challenges: Meltdowns and Anxiety. Also struggles with remembering things; Joelle, Age 13, California USA

08/13/2026

Exciting progress in rare disease research!

A recently published study has successfully reproduced key symptoms of DLG4 SHINE Syndrome in mice, marking an important milestone in understanding how the disease develops. By creating reliable animal models, researchers can better investigate underlying mechanisms, test potential therapies, and move promising treatments closer to patients.

Scientific breakthroughs often begin with advances like these, laying the groundwork for future innovations that could transform lives.

Thank you to all the co-authors & collaborators who made this work possible. A heartfelt thank you also goes to the wonderful DLG4 SHINE families involved in this study. Your dedication and partnership in advancing DLG4 research truly mean the world to us.

Read the paper at https://www.dlg4shine.org/articles

07/30/2026

We’ve reached a milestone: 300 known cases of DLG4 SHINE Syndrome have now been identified!

Each case represents a person, a family, and a story. Together, we all are helping better understand this disease and move research forward.

This milestone reflects growing awareness, stronger collaboration, and the power of shared experience. It also brings us closer to improved diagnosis, care, research, and potential future treatment options.

Thank you to every family, clinician, and researcher who helps make our progress possible. 💛

Together, we continue to build knowledge, connection, and hope.

If you have not yet, please register on our website at https://www.dlg4shine.org/register to be part of the count!

07/17/2026

Some minds SHINE brightly in quiet ways. 💫

Some SHINE through curiosity, others through persistence, creativity, or deep focus.

DLG4 SHINE Day honors individuals with cognitive differences associated with DLG4-related synaptopathy and reminds us that brilliance doesn’t look the same for everyone.

Let’s celebrate every kind of glow.

Let’s build spaces where differences are embraced, not hidden.

Because when every mind is allowed to SHINE, we all shine brighter.

07/10/2026

For the rare disease community, acceptance is more than a concept—it is the difference between being overlooked and being understood.

Many individuals living with rare diseases still face:
- Delayed diagnoses
- Limited treatment options
- Everyday barriers to care and accessibility

Acceptance means listening without doubt. It means recognizing lived experience as valid. It means creating a world where no one has to justify their disability.

But we must go further.
💜Research funding is urgently needed.

With over 300 million people worldwide affected by rare diseases, the lack of investment slows down:
- Diagnosis
- Treatment development
- Scientific discovery
This Disability Awareness Month, we invite you to take action:
✔ Support rare disease research initiatives
✔ Advocate for equitable funding
✔ Help turn hope into breakthroughs

Because when we invest in research, we invest in lives. https://www.dlg4shine.org/donate

05/13/2026

⭐️We love hearing about stories of support for our SHINEing Stars! ⭐️

Each year Braxton’s elementary school conducts a student store with funds directed to charities of their choosing. This year his school chose DLG4 SHINE Foundation as one of its recipients.

Braxton’s parents were also invited to present details about DLG4 SHINE Syndrome. What a wonderful gift from the school—not only the monetary donation but the awareness for Braxton and our rare disease.

Check out how the kids are “SHINEing their light” on Braxton in the second picture. 😊

Thank you to his school for coordinating this effort and to his parents for sharing the details with us! And, happy early birthday, B! 🎈

04/20/2026

Meet today's beautiful SHINEing Star Annike who has very refined taste is food, music and activities!!
Read more about Annike and her peers on our website at https://www.dlg4shine.org/rare-stars

Image description: A blond teenage girl is smiling over her shoulder at the camera.
Text Reads: Favourite foods: Sushi; Favourite activities: Singing and Horseback Riding; Favourite Singer: Leah and Sophia; Favourite people: Her best friend Tamara; Biggest challenges: her complex diagnosis (Developmental delay, intellectual disability, autism spectrum, ADHD, sensory processing difficulties, anxiety, muscle weakness (hypotonia), scoliosis, epilepsy).

04/10/2026

Our 2025 Annual Impact Report is here!

Check it out to get a glimpse of the highlights from last year and what we’re working toward for the DLG4 SHINE community.

We're very proud and thankful for the achievements and growth seen last year and determined to continue to build on them to reach new heights.

You can read the full report on our website athttps://www.dlg4shine.org/_files/ugd/46c7f2_583dd0829b3d4900a9f088611f96715a.pdf

03/30/2026

Meet Hank, today's SHINEing star, who has great taste! Who doesn't love pizza 🍕 and theme parks 🎢?
Read more about Hank and his peers at https://www.dlg4shine.org/rare-stars

Image description: A teenage boy wearing a red T-shirt and a cowboy hat is sitting and smiling at the camera.
Text reads: Favourite foods: Spagetti O’s and Pizza; Favourite activities: Swimming, Video games, Board games and visiting theme parks; Favourite TV Shows: Bob’s Burgers; Favourite people: Mom, Dad and Sister; Biggest challenges: Anxiety, overwhelmed by noise, making friends, going to and staying in school. Hank, Age 12, Utah, USA

03/26/2026

Today is Purple Day, a day of awareness for people living with epilepsy.
Please join us in making your feed, your clothes, and your hearts purple 💜

We send courage and love to all the DLG4 SHINE families, all the other genetic rare disease families, and every human whose daily life is impacted by this devastating and unpredictable disease!

Address

C/O PSM Registered Agent LLC/2775 Orchard Run Road
Dayton, OH
45449

Telephone

+16132901982

Website

http://dlg4shine.org/

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