Our Team
The People Guiding FSIG's Mission
At the heart of Fabry Support & Information Group (FSIG) is a shared commitment to education, connection, and compassionate support. Guided by our dedicated team, board members, and medical advisors, FSIG exists to ensure that no one affected by Fabry disease feels alone. Through mutual support and shared experiences, we help foster the emotional connection that is so vital for individuals and families navigating this journey.
To strengthen these connections, FSIG maintains a confidential database of individuals affected by Fabry disease, enabling meaningful networking while also helping document the growing number of diagnosed cases. We also maintain and continually update a trusted library of Fabry-related information, ensuring our community has access to accurate, current knowledge to support informed care and empowered decision-making.
Meet Our Team
Lisa Bacon
Executive Director
Lisa Bacon joined the Fabry Support & Information Group (FSIG) team in 2020 as Program Director, bringing years of nonprofit experience and a passion for serving individuals and families.
Diagnosed with Fabry disease at the age of 34, Lisa brings a personal understanding of the challenges faced by individuals and families living with Fabry disease. Her own journey has fueled her passion for advocacy, not only for herself but also for her family and others affected by Fabry disease. She is committed to helping families navigate the challenges of Fabry disease while ensuring that patients have access to information, support, education, and advocacy.
As Executive Director, Lisa is dedicated to advancing FSIG’s mission through education, advocacy, awareness, and support for the Fabry community.
Jack Johnson
Co-Founder and Senior Advisor
With the support of affected family members the Fabry Support & Information Group (FSIG) was formed in 1996. After years in a volunteer role as President of the Board of Directors Jack stepped down from the board to take on the position of Executive Director. Jack is responsible for much of the strategic vision of FSIG along with overall day-to-day management. Coming from a family with a long history of Fabry disease involvement, providing support and advocacy for others in the Fabry community has always been a matter of great personally importance.
Sabina Kineen
Program Director
After being a member since the early years of the organization, Sabina was happy to join the FSIG staff in 2025. Diagnosed with Fabry in 1984 after their father's initial diagnosis, Sabina and her sisters have served as caregivers in their family. Her personal and family experiences have fueled her passion for supporting the Fabry community. She is dedicated to creating meaningful connections among patients and families, offering understanding and encouragement along the journey. She is especially committed to amplifying the patient voice and ensuring it’s heard and valued in every aspect of care and research.
Barbara Peuster
Office Manager
Barbara taught elementary school before joining FSIG in 2015. She supports the Fabry community by coordinating the Fabry Assist and cooling vest programs, assisting with member data and correspondence, and helping coordinate FSIG programs and events. She also organizes and produces all print publications and event materials and helps facilitate product needs and general office operations to ensure the smooth operation of FSIG.
Cheryl Nolte
Accounts Manager
Cheryl began her role at FSIG in 2023 maintaining the day to day accounting. She has a Bachelor’s degree in Accounting and 35 years of experience. She enjoys working at FSIG’s home office in Concordia, Missouri. She and her husband have raised 3 children and now get to love on their 3 grandchildren as much as possible. She considers it a privilege to work at FSIG, gaining insight into Fabry disease and seeing firsthand how FSIG makes a difference in so many lives.
Our Board Of Directors
Amy Young
President
Info Coming Soon!
Jason Frett
Vice President
Info Coming Soon!
Debra Johnson
Secretary/Treasurer
Debra Johnson is a co-founder of the Fabry Support & Information Group (FSIG) and a dedicated advocate for individuals and families affected by Fabry disease. Since helping establish FSIG, Debra has played a vital role in building a supportive, informed, and connected community for patients, caregivers, and loved ones. As a member of FSIG’s Board of Directors, Debra continues to guide the organization’s mission with compassion, experience, and purpose.
Jean Campbell
Board Member
Jean was introduced to the rare disease community back in the early 1990s when she began working at the National Organization for Rare Disorders (NORD). Jean and Jack meet during FSIG’s early years, and have remained in contact ever since. Jean joined the FSIG Board two years ago to continue to provide support and patient advocacy guidance. Jean resides in Danbury, CT working as a patient advocacy consultant within the rare disease community.
Fred Battah
Board Member
Fred Battah is a San Antonio-based CEO of a pharmaceutical distribution company. Additionally, he is a long-standing active member of FSIG, demonstrating a commitment to professional excellence and community advocacy.
Mark Gelfond
Board Member
Mark was diagnosed with Fabry back in 1972. He was one of the 58 Phase III participants who helped get Fabrazyme approved by the FDA. He is married with two adult sons, and owns an apparel company with his wife in the Fashion District of Downtown Los Angeles.
Anita Brandt-Burgoyne
Board Member
Anita Brandt Burgoyne was diagnosed with Fabry Disease at aged 12. The disorder has affected only a small contingent of her family, including her cousin, Mark, who brought her onto the board of FSIG. Anita lives just outside the Los Angeles area and works as a feature film editor and screenwriter. She looks forward to becoming more involved with FSIG in the future.
Our Scientific Advisory Board
The contributions of our medical advisors are invaluable and are greatly appreciated. FSIG is very fortunate to have John Jefferies, M.D., William Wilcox, M.D., PhD and Eric Wallace, M.D. They all have many years experience in the treatment and research of Fabry and other related Diseases.
