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

Opportunity for Families to Participate in a Phenotyping Study!Our research partners at Copenhagen University Hospital, ...
01/27/2026

Opportunity for Families to Participate in a Phenotyping Study!

Our research partners at Copenhagen University Hospital, Rigshospitalet in Denmark are conducting two phenotyping studies: one deep phenotyping of all individuals with SHINE Syndrome and another focusing on the phenotype in adults (16 years or older) with SHINE.

They are planning to complete both this year and are hopeful to have a complete picture of how DLG4 SHINE affects our loved ones in daily life.

Deadlines are:
March 1st (Adult study)
April 1st (Deep phenotyping)

If you are interested in participating and haven't already reached out, please contact Amanda Levy at marie.amanda.levy@regionh.dk.

To learn more about what a phenotyping study is and why it's important for DLG4 SHINE families to participate read more at https://www.dlg4shine.org/what-is-a-phenotyping-study

Today's SHINEing Star is sweetie-pie Ella who needs all the yummy breakfast food she can get to run after her twin broth...
01/19/2026

Today's SHINEing Star is sweetie-pie Ella who needs all the yummy breakfast food she can get to run after her twin brother Theo!
You can read more about Ella and her peers on our website at https://www.dlg4shine.org/rare-stars



Image Description: a little girl with curly brown hair and big brown eyes wearing a pink shirt is sitting and looking at the camera
Text Reads: DLG4 SHINEing Star; Favourite foods: Pasta, breakfast food and strawberries; Favourite activities: Playing with and chasing twin brother Theo; Favourite TV Shows: The Wiggles; Favourite people: Twin Brother Theo; Biggest challenges: Communication and global developmental delays; Ella, Age 2, Texas, USA

Just a few days left to make your end-of-year gift!Every donation supports research, family programs, and hope for our l...
12/26/2025

Just a few days left to make your end-of-year gift!

Every donation supports research, family programs, and hope for our loved ones.
Let’s finish strong.
www.dlg4shine.org/giving-tuesday

Wishing our community of families, friends, researchers, clinicians, partners, supporters, advocates, and the entire rar...
12/24/2025

Wishing our community of families, friends, researchers, clinicians, partners, supporters, advocates, and the entire rare disease community, a very happy holiday season!

Family gatherings are more than events—they’re lifelines for our rare disease community. These moments give families the...
12/23/2025

Family gatherings are more than events—they’re lifelines for our rare disease community.

These moments give families the chance to connect, share experiences, and find strength in one another. They remind us that no one is walking this journey alone.

With your support, we can continue funding gatherings that bring hope, resources, and lasting friendships to families impacted by DLG4 SHINE Syndrome.

Help us keep these connections strong: www.dlg4shine.org/giving-tuesday

We’re working toward a biomarker study that could help researchers better understand DLG4 SHINE Syndrome and move us clo...
12/13/2025

We’re working toward a biomarker study that could help researchers better understand DLG4 SHINE Syndrome and move us closer to treatments. 💜

This initiative depends on our fundraising success. With enough support, we can launch a study that looks for signals in the body to track symptoms and see how treatments might help.

It’s a major step toward clinical trials but requires funding. And that starts with us.
Help make it happen:www.dlg4shine.org/giving-tuesday

Thank you to our Giving Tuesday supporters who pushed DLG4 SHINE Foundation past the halfway mark to our end-of-year fu...
12/12/2025

Thank you to our Giving Tuesday supporters who pushed DLG4 SHINE Foundation past the halfway mark to our end-of-year fundraising goal!

Every gift so far will be doubled, but we still have $100,000 available to be matched dollar-for-dollar, turning it into $200,000 for our kids and critical research!

Let’s reach $200K by December 31st together!

Start your team if you haven’t yet, or choose a precious team and help them reach their personal goals!

➡️https://www.dlg4shine.org/giving-tuesday

Today we say "Guten Tag" to our sweet SHINEing Star Emily!Image description: a little girl with pigtails is sitting outs...
12/09/2025

Today we say "Guten Tag" to our sweet SHINEing Star Emily!

Image description: a little girl with pigtails is sitting outside, wearing a bright pink coat, and smiling at the camera.
Text Reads: DLG4SHINEing Star; Favourite foods: Everything including French Fries and vegetables; Favourite activities: loves being outside, dancing and going to the swimming pool.; Favourite Things: Loves to cuddle and wave and say hello to everyone.; Favourite people: Her four older brothers; Biggest challenges: ADHD, repeated words, afraid of animals and sounds and gets panic attacks; Emily; Age 5; Germany

“Having a child with a rare disease comes with so many questions about the future. Fundraising for the foundation is imp...
12/04/2025

“Having a child with a rare disease comes with so many questions about the future. Fundraising for the foundation is important for us because we are helping the researchers uncover what treatment options are possible. We have learned many new things about DLG4 in the 4 short years since Braxton’s diagnosis and know that it is only possible through the hard work from the foundation and researchers.”

Meet The Keelers—one of many families driving research forward.
Join us to make a difference. www.dlg4shine.org/giving-tuesday

Big news! Chase is offering a 2-for-1 match on all employee donations to DLG4 SHINE Foundation today, Giving Tuesday, De...
12/02/2025

Big news! Chase is offering a 2-for-1 match on all employee donations to DLG4 SHINE Foundation today, Giving Tuesday, December 2, 2025!

That means every $50 becomes $150, tripling your impact.

If you’re a employee, now’s the time to contribute for DLG4 SHINE Syndrome!

Giving Tuesday is TOMORROW!Your donation supports research and resources for families impacted by DLG4 SHINE Syndrome.Le...
12/01/2025

Giving Tuesday is TOMORROW!
Your donation supports research and resources for families impacted by DLG4 SHINE Syndrome.

Let’s make this our biggest day of giving yet.
https://www.dlg4shine.org/giving-tuesday

Address

P. O. Box 1273
Pleasant Grove, UT
84062

Telephone

+16132901982

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