NonprofitsFabry Support & Information Group

Voluntary Health Associations & Medical Disciplines

Fabry Support & Information Group

CONCORDIA, MO

Total revenue

$645K

Total expenses

$608K

Net assets

$732K

Grants received

$22K

8 grants

EIN

431890134

Tax year

2024

Mission

Our mission is to provide information, advocacy, education, and compassionate support to improve the quality of life and care for those individuals suffering with Fabry.

Programs

2 programs

WEBSITE EDUCATION - FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2024, the website received 23,400 visits and continued to serve as a trusted source of Fabry-related information.

Expenses: $16K

EXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2024, approximately 150 attendees participated in the conference, which included presentations from leading medical experts.

Expenses: $165K

Financials

FY 2024

Revenue

Contributions & grants$367K
Program service revenue$206K
Investment income$11K
Other revenue$62K
Total revenue$645K

Expenses

Grants paid$21K
Salaries & benefits$263K
Fundraising$22K
Other expenses$325K
Total expenses$608K
Total assets$759K
Net assets$732K

People

8 listed

NameRoleCompensation

AMY YOUNG

PRESIDENT

Board

0.5 hrs/wk

JASON FRETT

VICE PRESIDENT

Board

0.25 hrs/wk

DEBRA JOHNSON

SECRETARY/TREASURER

Board

15 hrs/wk

FREDDY BATTAH

BOARD MEMBER

Board

0.1 hrs/wk

MARK GELFOND

BOARD MEMBER

Board

0.1 hrs/wk

JEAN CAMPBELL

BOARD MEMBER

Board

0.1 hrs/wk

ANITA BRANDT BURGOYNE

BOARD MEMBER

Board

0.1 hrs/wk

JACK JOHNSON

CHIEF EXECUTIVE OFFICER

Staff

$83K

40 hrs/wk

Grants received

Showing 8 of 8

FromAmountPurposeYear
$10K
TO SUPPORT FABRY NEWBORN SCREENING INITIATIVES AS A MEMBER OF THE LYSOSOMAL STORAGE DISEASE COALITION.
2024
$10K
NEWBORN SCREENING SUPPORT VIA TESTING FOR TOTS, AND ORGANIZATION WITHIN FSIG, AND VIA THE LYSOSOMAL STORAGE DISEASE (LSD) COALITION.
2023
$250
MATCHING GIFTS
2023
$50
MATCHING GIFTS
2023
$908
MATCHING GIFTS
2022
$250
MATCHING GIFTS
2022
$348
GENERAL PURPOSE
2020
$100
MATCHING GIFTS
2020

Funded by

$22K from 4 funders · 8 grants · 2020–2024

National Fabry Disease Foundation

$20K · 2 grants · 2023–2024

Ge Foundation

$2K · 4 grants · 2020–2023

Aetna Foundation Inc

$348 · 1 grant · 2020

The Pfizer Foundation Inc

$50 · 1 grant · 2023

Details

EIN431890134
NTEE codeG20
Subsection03
Ruling date2000-10
Formed2000
Employees8
Volunteers2
FABRY SUPPORT & INFORMATION GROUP — Mission, Financials & Grants Received | Grantivo