Support 2026 Research!

We've been offered $15,000 in donation matches for White Sutton Day, which is TODAY! Thank you to Teddy's Stores and BFARR Contracting for these generous offers!

 

Help Us Fund Research!

Our goal is to fund an important research project focused on understanding the root cause of White Sutton syndrome. This work will be led by the Hester Lab at Nationwide Children’s Hospital and will use cutting-edge—but family-friendly—science to study how changes in the POGZ gene affect brain development.


Why?

Right now, treatment for White Sutton syndrome only helps manage symptoms. Nothing targets the underlying cause — the changes in the POGZ gene that affect how the brain grows and functions.

This research aims to begin changing that.

In Simple Terms: What the Researchers Will Do

Explanation

What This Could Lead To

Why We Need Your Help

A Deeper Dive

What Success Looks Like

Commitment to Transparency

They’ll create tiny models of a developing human brain — called brain organoids — using cells from individuals with White Sutton syndrome. These organoids help scientists see:

  • How POGZ variants affect early brain development
  • Which parts of the brain are most affected
  • What changes could be targeted in future treatments

They’ll also use gene editing tools to “fix” certain POGZ variants in the lab to see whether correcting the gene also corrects the problems. This gives researchers a cause → effect understanding that’s needed for therapy development. The 1-pager that is part of our fundraising kit goes into more detail about this.

This research will give the scientific community:

  • A deeper understanding of what POGZ does in brain development
  • New tools for testing future treatments
  • A roadmap for developing targeted therapies

For families, it brings us one step closer to real, meaningful treatments — not just symptom management.

This project builds the foundation for future therapies. It’s one of the most concrete research pathways we have toward long-term progress for individuals with White Sutton syndrome.

Supporting this work is how we move from hope → action → real change.

We’ve set a goal to fully fund this project by October 31st, 2026, but we need to take advantage of the next 6 months between now and April of 2026, since that is “giving season” when the majority of donations are received.

What Is POGZ and Why Does it Matter?

POGZ is a gene that helps control how other genes turn on and off during brain development. It works by shaping chromatin — the packaging around DNA — so cells can access the right genes at the right time.

Changes (variants) in POGZ can disrupt:

  • Brain cell proliferation (how cells divide)
  • Brain cell migration (how cells move into the right layers)
  • Neuron differentiation (how cells mature into working neurons)

This can lead to many of the developmental, behavioral, and sensory challenges seen in White Sutton syndrome.

The Challenge

Although POGZ was linked to the syndrome nine years ago, we still don’t fully understand:

  • Why different variants cause different symptoms
  • How these variants change cell behavior
  • Which changes could be corrected with therapy
  • How to measure the effects of potential treatments

That’s what this project aims to develop: a deeper understanding of POGZ.

Research Aim 1: Create a Large Set of Patient-Specific Stem Cell Models

Researchers will generate induced pluripotent stem cells (iPSCs) from 12 patients with a wide range of POGZ variants. These cells will be created from blood samples and can be turned into almost any cell type in the body — including brain cells.

Why This Matters

Having multiple patient-specific stem cell lines allows researchers to compare:

  • How different variants behave
  • Which variants cause the most severe disruptions
  • What “normal” vs “corrected” looks like

They will also use CRISPR/Cas9 gene editing to correct specific variants.
If correcting the gene fixes the cell-level problems, it gives strong evidence for targeted treatments.

Research Aim 2: Build Brain Organoids to Model Early Human Brain Development

Brain organoids are small 3D structures grown from iPSCs that mimic aspects of a developing human brain.

In this project, organoids will be used to study:

  • Cell division and developmental timing
  • How progenitor cells grow and mature
  • How neurons develop and connect
  • Changes in gene expression (using single-cell RNA sequencing)

Why This Matters

Organoids allow researchers to:

  • See how POGZ variants disrupt brain development
  • Identify specific pathways or cell types affected
  • Create a platform for testing future therapies

This becomes the “test bed” for evaluating treatment strategies — including potential gene therapy or precision-medicine approaches.

What Success Looks Like

By the end of this project, the scientific community will have:

  • The largest known collection of POGZ patient stem cell models
  • Brain organoid models from across the POGZ variant spectrum
  • CRISPR-corrected “isogenic controls” to prove causation
  • Clear data about how specific variants impact development
  • A validated platform for future therapy testing

For families, this means we move from ideas → actual, testable strategies for treatment.

All donations go directly into a dedicated research account held by the White Sutton Syndrome Foundation and are overseen by the full volunteer board. Funds can only be used for approved research and cannot be redirected. The Foundation is 100% volunteer-run, and every research dollar goes straight to the project led by Dr. Mark Hester at Nationwide Children’s Hospital. Quarterly updates and a real-time funding tracker will show exactly how the funds are used. You can read our full commitment to transparency here.

Get Started with Fundraising


Short stories win.

Keep your message clear, concise and heartfelt.


Use images.

A single picture increases donations significantly.


Set a realistic goal.

We have a lot to raise, but you don’t have to do it alone.


Don’t be shy.

People want to support you — you’re giving them a chance to.


Promote your link.

Add your fundraising link to your bio, email signature, group chats, etc.


Share the impact.

People like knowing exactly what they’re funding.

Fundraising Kit

Before you get started with your fundraiser, be sure to download our fundraising kit. It’s full of social media images, a few videos, text templates and other goodies that we hope will equip you with the tools to have a successful fundraiser. Thank you for your help with this important work – we’re so excited to see how far we can get together!

1. Choose

First things first: you need to choose what platform you want to use for your fundraiser. Below are some good options to get you started.

✔ GiveLively (Foundation Recommended)

GiveLively is the donation platform we’ve used for years – the donation widget at the top of this page is a GiveLively tool. Aside from simply taking donations, GiveLively also lets you create your own fundraising page, (either as an individual or as a team) where you can share your story, add photos, and track donations — all with some of the lowest fees of any platform.

✔ Facebook Fundraisers

Simple and effective, but payouts can take a while for the foundation to receive. Facebook sends reminders for you and your supporters can donate right inside the app.

✔ GoFundMe Fundraisers

Similar to GiveLively, but on a more familiar platform some people prefer. Processing fees are also similar to GiveLively, so this can be used in you prefer.

✔ Direct Donation Links

If you prefer to skip setting up a campaign, you can share the link to this page or to our direct donation link in emails or text messages We can also accept donations via Zelle.

2. Build

Now that you’ve decided where you’re going to fundraise, it’s time to get started with building your campaign. If you selected GiveLively, be sure to look at the images in the kit that are built for that.

3. Make It Yours

This part matters more than anything else. To be frank, people aren’t interested in what the White Sutton Syndrome Foundation is doing. The people you’re talking to care about why that mission matters to you. Supporters give to people, not just causes — keep it real, honest, and human.

Add one or two sentences about:

  • Why you care
  • Who you’re fundraising for
  • Why this research is important

Check in the kit for easy-to-use templates to get you started, but remember: make it your own.

4. Share!

Good ways to share your fundraiser:

Be sure to utilize the images, videos and other assets available in the kit as you share with your network. Best practice for fundraisers is to share once at launch, once halfway through, and an “urgent” one right before it ends. (You don’t need to post every day — unless you want to!)

Be sure to encourage your donors to ask their employers if they offer a donation match. This is much more common than most people realize, and often uses a platform like Benevity or YourCause (both of which we are registered with).

5. Post Updates

This is great content, and serves many purposes. We’ve provided a goal thermometer at the top of this page that you can check whenever you’d like for real-time progress towards our goal. Types of updates you can post:

  • A photo of you with the person who motivated you to fundraise for this cause.
  • A milestone announcement (“We hit 50%!”)
  • A quick note about the research you’re supporting (again, there’s a flyer in your kit)

These updates really help donors feel connected and see the results of their generosity — and often bring in a second round of support!

6. Say THANK YOU!

These are your people. We are enormously grateful for every single donation that comes in, but you’re the one who knows them best. Please pass on our sincere thanks for their help with this effort. We couldn’t do it without them, or without you. THANK YOU!