New Name, Same Mission: We’re Officially the Salla Treatment and Research Foundation

In 2018, founders Jessica and Mike Foglio created A STAR for Ben, Inc. in honor of their wonderful son, Ben. What began as one family's determination to raise awareness and drive research for Salla Disease has grown into a community of families, scientists, and advocates across the globe. As our work has grown in scale and scope, so too has our identity. Today, we’re proud to share a meaningful update: Our organization has officially changed its legal name from A STAR for Ben, Inc. to the Salla Treatment and Research Foundation, Inc.

While this name may already be familiar to many of you, this change formalizes what our community has long embraced: a foundation focused on advancing care, connection, and hope for everyone impacted by Salla Disease.

This change ensures our legal name reflects the breadth of our mission and the global reach of our work, strengthens clarity across communications and partnerships, better represents our commitment to the entire Salla Disease community, and aligns our legal identity with how we’ve been operating publicly.

Although the name has changed, our mission and status remain the same. The Salla Treatment and Research Foundation is a 501(c) (3) tax-exempt charitable organization dedicated to supporting and advancing Salla disease treatments, research, education, awareness, and family support networks. Our US EIN is still 82-5186436, and the name change will be reflected on the US IRS website with their next update.

What began as a grassroots effort by a family seeking to make a positive impact has evolved into a foundation with a global reach powered by the strength of our community. Thank you for your support and for helping us advance our mission.

With gratitude,

The Salla Treatment and Research Foundation