Fabry Support & Information Group

“There are family relationships between amy young, jason frett, debra johnson and jack johnson”

“The board of directors are not compensated. The fsig board and the executive director decide compensation.”

“The organization makes its governing documents, conflict of interest policy and financial statements available to the public upon request. The official annual report is the organizations 990. Other record requests will be honored except when disclosure violates governing statues and regulations.”

“The board and the executive director review the draft of the 990 before filing.”

“Program Service Expenses 38,544, Grants and allocations 0, Revenue 49,000 FABRY ASSIST FORMERLY RAFT-FSIG provides financial assistance to individuals and families facing temporary hardships related to Fabry disease. Support may include bridging to longer-term programs, access to educational opportunities, or help with other essential needs. No assistance is provided for treatment drugs. In 2024, FSIG assisted 79 patients with approved transactions.”

“Program Service Expenses 31,566, Grants and allocations 0, Revenue 39,000 NEWSLETTERS - FSIG publishes three newsletters every year to keep patients, families, and healthcare professionals informed of recent developments in Fabry research, treatments, and community news. In 2024, approximately 7,000 newsletters were distributed electronically and in print.”

“Program Service Expenses 0, Grants and allocations 649, Revenue 0 COOLING VEST PROGRAM - Because many Fabry patients cannot sweat and are at risk in hot environments, FSIG provides cooling vests to improve comfort and safety. In 2024, FSIG distributed 9 cooling vests to patients in need.”

“Program Service Expenses 0, Grants and allocations 0, Revenue 0 INFORMATION PACKETS-FSIG distributes Fabry information packets to newly diagnosed patients, families, and healthcare professionals to increase understanding and awareness of the disease. In 2024, approximately 50 packets were mailed.”

“Program Service Expenses 0, Grants and allocations 0, Revenue 0 MEDICAL ALERT CARDS AND WRISTBANDS -To support patients in medical emergencies, FSIG provides Fabry-specific medical alert cards and wristbands, helping ensure recognition of the disease during critical events. In 2024, approximately 250 cards and wristbands were distributed.”

“Program Service Expenses 6,997, Grants and allocations 0, Revenue 9,500 NEWBORN SCREENING EDUCATION - FSIG works nationwide to advance newborn screening for Fabry disease by collaborating with states and advocating for its inclusion as a screened condition. As families are identified through these programs, FSIG provides educational meetings that offer essential information, resources, and support to help them navigate a new diagnosis. Through these efforts, FSIG continues to raise awareness and equip families with the knowledge they need from the very beginning of their Fabry journey.”

“THE ORGANIZATIONS MISSION - -It is the mission of the Fabry Support Information Group FSIG to raise awareness of Fabry disease and its symptoms, to advocate for community needs and to lead the fight for the most effective treatment possible and eventually a cure. FSIG provides a link for the Fabry community to information, each other, the medical community, researchers, the pharmaceutical industry and regulatory authorities. FSIG strives to support affected families and individuals lead fuller lives.”