FSIG marks 30 years of Fabry advocacy as new director takes the helm

When Jack Johnson helped found the Fabry Support & Information Group (FSIG) 30 years ago, he was driven by his own experience living with the rare genetic disorder — and a determination to ensure no other family had to navigate Fabry disease alone.

Now, as the organization marks three decades of bringing patients together and pushing for earlier diagnoses, Johnson is stepping into a senior adviser role. Taking over as executive director is Lisa Bacon, a former FSIG volunteer and the group’s program director since 2020.

“While our leadership is evolving, our mission remains unchanged. FSIG will continue to serve as a trusted resource, advocate, and partner for everyone impacted by Fabry disease,” Bacon said in a press release to Fabry Disease News.

Fabry is a rare genetic disease that results in the toxic accumulation of certain fatty molecules, damaging tissues and organs, particularly the kidneys and heart. In the three decades since FSIG’s inception, care for this disease has been transformed by the advent of multiple therapies targeting its underlying cause.

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Advancing research and community

FSIG has been a driving force in funding research and connecting patients with cutting-edge new therapies. In addition to forging collaborations with academic researchers and industry to improve Fabry care, the group has built a worldwide network of “Fabry warriors” who can offer one another advice, support, and a sense of community.

One of the FSIG’s key goals has been to help people with Fabry disease get diagnosed earlier. To that end, the organization is pursuing a campaign called Testing for Tots, which aims to expand access to newborn screening for Fabry. Newborn screening involves testing all babies at birth so that those affected can be diagnosed before developing irreversible organ damage.

Looking ahead over the next 30 years, newborn screening will remain a primary priority for FSIG. The group also plans to continue strengthening patient education, fostering peer connection opportunities, advancing health equity, and promoting research into new treatment paradigms.

People in the Fabry community, as well as pharmaceutical companies and academic institutions, are invited to celebrate FSIG’s 30 years by attending or sponsoring events, including the 2026 Fabry Women’s Summit, to be held Oct. 16-18 in Minneapolis. Interested supporters can also get involved by volunteering or donating.

“We are committed to ensuring that every patient and family feels informed, supported, and connected while continuing to advance research and innovation that improves lives,” Bacon said.