Help us directly support the 2026 DESSH Clinic & Family Conference

Start a fundraiser to benefit individuals living with DeSanto-Shinawi Syndrome, along with their families and caregivers today

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A supporter of Olivia Odom
I donated in support of this campaign on Olivia Odom's page.
Joel Carrera
I donated in support of this campaign on Monica Birkhahn's page.
Anna Maria Birkhahn Flores
I donated in support of this campaign on Monica Birkhahn's page.
Daniel & D'Ann White
"Glad y'all are able to go!"

$100

Claudia Hernández
I donated in support of this campaign on Monica Birkhahn's page.
Lilliam R
I donated in support of this campaign on Monica Birkhahn's page.

$50
Jill Moore
I donated in support of this campaign on Monica Birkhahn's page.
Tess Roach
"Lilah is a gem and we want to honor her and all other DESSH kids"

A supporter of Olivia Odom
I donated in support of this campaign on Olivia Odom's page.

$50
Heather Cox
I donated in support of this campaign on Olivia Odom's page.

$30
A supporter of Olivia Odom
"Olivia is my sisters granddaughter and even though I have a lot to learn about this, it is important to me. ❤️"
Angelica Campos
I donated in support of this campaign on Monica Birkhahn's page.

$100

A supporter of Olivia Odom
I donated in support of this campaign on Olivia Odom's page.

$250
A supporter of Monica Birkhahn
I donated in support of this campaign on Monica Birkhahn's page.

$25
A supporter of Olivia Odom
I donated in support of this campaign on Olivia Odom's page.

$50
A supporter of Olivia Odom
I donated in support of this campaign on Olivia Odom's page.

Kristy Fessenden
I donated in support of this campaign on Olivia Odom's page.

$50
Ashley Jordan
I donated in support of this campaign on Olivia Odom's page.

$20
Pat Seger
"Prayers for all. "

$100
A supporter of Caitlin Piccirillo
I donated in support of this campaign on Caitlin Piccirillo's page.

Ewa Bressler
"Leo is so lucky to have you as a mom, Caitlin."

$50
Caroline Franchino
"What you are doing is amazing Caitlin!"
A supporter of Caitlin Piccirillo
I donated in support of this campaign on Caitlin Piccirillo's page.
FiLumena Life Solutions
"So proud of the work you’re doing! "

$30

View All 24 Supporters

$2,010 towards $10,000

20 80 U

20%

Towards Our Goal

5

Fundraisers

24

Donations

0

Recurring Donors

We are asking DESSH supporters to rally their friends, family, and networks to support the upcoming DESSH Clinic and Conference. By becoming a fundraiser for The DESSH Foundation, you will help more individuals living with DeSanto-Shinawi Syndrome access care.

Funds raised directly support the 2026 DESSH Clinic & Family Conference, where:

Patients are seen by multiple specialists in one coordinated setting—often the first time they meet clinicians with real experience in DESSH
Families meet other individuals with DESSH—often for the first time ever, reducing isolation and building lasting connections
Patients contribute clinical data, medical histories, and biosamples to an ongoing natural history study, which serves as the foundation for future treatment development
Physicians evaluate multiple DESSH patients in one place, allowing them to build real expertise more quickly and improve care for the entire community

This is not just a medical visit—it is a concentrated effort to improve care, collect critical data, and accelerate research.

Starting a fundraiser is easy to do, and it's fun! We'll even give you all the tools you'll need to make a difference. With your help, we can build a growing, well-documented patient dataset that enables meaningful research and informs future treatments; a network of clinicians who are becoming true experts in DESSH; and a connected community of families who are no longer navigating this condition alone. Thanks for your help!