About This Fundraiser

Every two years, the Barth Syndrome Foundation Conference brings together individua

ls and families affected by Barth syndrome, along with clinicians and researchers from around the world. For over 25 years, this gathering has grown from a small group of families into a global community—now welcoming hundreds of attendees.

This year’s conference, taking place July 20–25 in Bonita Springs, Florida, marks a powerful milestone: it will be the first time our community gathers in person following the approval of the first-ever treatment for Barth syndrome.

But attending conference comes at a cost.

For many families, travel and lodging expenses—often totaling around $3,500—can be a significant barrier. As costs continue to rise, so does the need for support. In 2024 alone, 13 families relied on financial assistance to attend. This year, with increased awareness and engagement across the community, that number is expected to grow.

To help ensure that every family who wants to attend conference has the opportunity to be there, we’re hosting a special online auction featuring handcrafted quilts and artisan goods generously donated by members of our community and beyond.

Each item represents time, care, and creativity—transformed into meaningful support for families who need it most.

How It Helps

Proceeds from this auction directly support the Barth Syndrome Foundation Travel Fund, helping to cover flights, lodging, and related expenses for families attending conference.

Your participation—whether bidding, sharing, or donating—helps remove financial barriers and makes it possible for more individuals and families to:

Connect with others who understand their journey
Participate in clinical research and on-site studies
Learn from leading experts in the field
Be part of a global community shaped by resilience and progress

Auction Details

Auction Opens: May 20, 2026
Auction Closes: May 31, 2026

Browse, bid, and share with your networks—every action helps extend the reach of this effort.

Patching Together Support

A Community Auction for Conference Travel