Help Us Make the 2026 DESSH Clinic Possible

Help me help individuals living with DeSanto-Shinawi Syndrome, along with their families and caregivers

Hi everyone,

I’m reaching out to share something that’s really important to our family.

DeSanto-Shinawi Syndrome (DESSH) is an ultra-rare condition, and for most families, it means navigating a diagnosis with very little guidance. Many individuals with DESSH go years—sometimes their entire lives—without ever meeting another person with the same condition or a doctor who truly understands it.

This year, I’m fundraising to support the 2026 DESSH Clinic & Family Conference.

This clinic is not a typical medical visit. It’s one of the only opportunities where individuals with DESSH can be seen by multiple specialists who are familiar with the condition—often for the very first time. It’s also where families finally meet others on the same journey, which is something that’s hard to put into words.

Just as important, patients who attend the clinic contribute their medical information and samples to a natural history study. This data is critical—it helps researchers understand the condition over time and serves as the foundation for developing future treatments.

Another powerful part of the clinic is that doctors see many DESSH patients all at once. That concentration helps them recognize patterns, build real expertise, and ultimately improve care for everyone with the condition.

I’ve created a fundraising page to support this work, and I’m hoping you’ll consider being a part of it.

Every donation helps make this clinic possible—supporting families, advancing research, and moving us closer to better care and future treatments.

If you’re able, please consider making a donation or sharing my page.

Thank you so much for your support—it truly means a lot to our family.

Give today.

Giving online is easy and fast, and your support will make a real difference. I appreciate your help!

[Your Fundraiser's Name Will Automatically Go Here!]

I started this fundraiser because no family should feel alone navigating a rare diagnosis. The DESSH Clinic brings patients together with expert doctors—often for the first time—and helps collect the data needed to move research forward. This is how progress happens. If you’re able to give or share, it would mean so much 💛 [Insert Link] #RareDiseaseAwareness #DESSH #DESSHClinic #DESSHFoundation

Thank you for your support 💛

Hi [Donor Name],

Thank you for your generous donation—it truly means so much.

Your support is helping make the 2026 DESSH Clinic & Family Conference possible, where patients can connect with expert doctors, meet other families, and contribute to research through a natural history study that helps move toward future treatments.

We’re so grateful to have you as part of this effort.

Thank you again 💛
[Your Name]

[Your Fundraiser's Name Will Automatically Go Here]

Thank you to everyone who’s donated and shared so far 💛 We’re making great progress! If you haven’t had a chance yet, I’d be so grateful for your support. #DESSHClinic #DESSH #Rareawareness