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

02/28/2026

Being one in a million can be quite isolating.
Today, Rare Disease Day, we celebrate each of the “one a million” Rare Disease patients around the world.
Listen to DLG4 SHINE parents sharing the importance of finding a sense of community.

02/27/2026

Here is our why - our DLG4 SHINEing Stars ✨
These sweet, happy faces are the reason behind the advocacy and the fuel behind the fire.

02/26/2026

Where in the world is DLG4 SHINE? Everywhere!
We are in contact with 254 patients in 33 countries.
But there is little doubt that there are many more in many more places.
Help us reach them by sharing this post!

02/25/2026

Awareness isn’t just visibility—it’s impact.

Because DLG4 SHINE is so rare, every share helps us:
• Reach undiagnosed families
• Connect with global researchers
• Strengthen our data and community
• Build momentum for future treatments

Your voice expands our reach.
Your share creates connection.
Your support fuels hope.

Help us close out Rare Disease Month with a wave of awareness.

02/23/2026

We're thrilled to congratulate Dr Amanda Levy on successfully defending her PhD thesis this past Friday.
This monumental milestone marks the culmination of years of hard work and dedication and we are extremely thankful that DLG4 SHINE was the focus of this impactful research.

02/21/2026

You don’t need a medical degree to make a difference.

Here’s how anyone can support DLG4 SHINE families:
• Share awareness posts
• Start a fundraiser
• Invite your workplace or school to participate
• Connect us with researchers or clinicians
• Learn and spread the word

Every action—big or small—helps build a future where families have answers, treatments, and hope.

Share this to inspire someone else to take action.

02/19/2026

✨ Your annual updates to Simons Searchlight help researchers understand how DLG4/SHINE Syndrome evolves over time, benefiting families like yours. We regularly add new surveys to the study, and some are repeated each year, including a follow-up medical history survey. By sharing your journey annually, you support future research and inspire hope in others.

We encourage you to continue your journey with Simons Searchlight and join our growing community. Together, we can uncover new insights and foster hope for the future.

Visit your dashboard to share updates and complete surveys: http://bit.ly/Simons_Searchlight_Dashboard

02/17/2026

✨ By donating an optional blood sample, you can create invaluable research resources for DLG4/SHINE Syndrome, including DNA and cell lines.
This simple, one-time step can greatly impact global research efforts. Your de-identified sample will be available to approved SFARI researchers. If you prefer not to donate, you can still contribute through surveys.

Ready to donate? Email us at Coordinator@SimonsSearchlight.org, and they’ll get your kit to you ASAP!

At this time, blood donation is only available to families in the U.S., but Simons Searchlight is actively exploring ways to expand international options. If you’re a non-U.S. family and have questions about blood donation, they welcome you to reach out to them at Coordinator@SimonsSearchlight.org—they’d be happy to discuss possibilities with you.

Learn more about how your blood samples support important research worldwide: https://bit.ly/Searchlight_Data_Biospecimens.

02/15/2026

Behind every rare disease diagnosis is a family learning, adapting, and advocating with incredible strength.

Families affected by DLG4 SHINE show us what resilience looks like—celebrating milestones, navigating challenges, and building community with others who understand.

This Rare Disease Month, honor their journey by sharing their story forward.
Awareness is an act of love.

02/13/2026

✨ Complete all assigned research surveys and add your voice to research that matters! Every survey you complete with Simons Searchlight helps researchers uncover new insights into DLG4/SHINE Syndrome, from development to behavior.
For specific surveys, Simons Searchlight provides you with an individualized report to show how your child compares to others with your or your family member's rare genetic neurodevelopmental condition which can be shared with doctors.

Also as a thank you, you’ll receive a gift card for your time.

Are you a participant ready to complete this task? Go to http://bit.ly/Simons_Searchlight_Dashboard

*Not a Simons Searchlight participant? Sign up at http://www.SimonsSearchlight.org

02/12/2026

Rare doesn’t mean impossible.

Researchers studying DLG4 SHINE are uncovering how this gene affects synaptic function—and how future treatments might improve learning, communication, and quality of life.

But research for ultra rare conditions depends on community-powered awareness and funding.

Your share today could reach the scientist, donor, or family who accelerates the next breakthrough.

02/10/2026

✨ Your medical history offers researchers key insights into what it means to have DLG4/SHINE Syndrome.

Simons Searchlight's secure platform allows families worldwide to contribute to this vital work. Your medical history is the first survey we ask you to complete after you finish your registration because it contains some of the most important data researchers need.

As a thank you, you’ll receive a gift card for your time.

Are you a participant ready to complete this task? Go to http://bit.ly/Simons_Searchlight_Dashboard

*Not a Simons Searchlight participant? Sign up at http://www.SimonsSearchlight.org

Address

P. O. Box 1273
Pleasant Grove, UT
84062

Telephone

+16132901982

Website

http://dlg4shine.org/

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