Organizations Filed Purposes:
THE LUPUS FOUNDATION OF AMERICA IS DEDICATED TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPU THROUGH PROGRAMS OF REASEARCH, EDUCATION AND ADVOCACY. OUR VISION IS A WORLD WITHOUT LUPUS. THE ORGANIZATION WILL ADVANCE THE SCIENCE AND MEDICINE OF LUPUS TO FIND A CURE AND IMPROVE THE QUALITY OF LIFE FOR PEOPLE AFFECT BY LUPUS.
THIS YEAR BROUGHT UNPRECEDENTED CHALLENGES TO OUR MISSION. COVID 19 CAUGHT US AND THE NATION OFF GUARD. THERE WAS NO PLAYBOOK NOR OPERATIONS MANUAL THAT GUIDED US THROUGH THIS UNPREDICTED JOURNEY. EVEN SO THIS SMALL STAFF WAS ABLE TO RISE ABOVE THE ADVERSITY AND WITH LITTLE RESOURCES WAS ABLE TO MEET THE GROWING NEEDS OF THOSE IMPACTED BY LUPUS. AS OUR RESOURCES BECAME DRAINED WITH LESS VOLUNTEERS AND LITTLE REVENUE, THE NEED FOR OUR SERVICES ROSE TO ENORMOUS PEAKS. THE CREATIVITY AND PASSION OF THE STAFF SEIZED THE OPPORTUNITY TO EXPLORE MANY NEW WAYS TO PROVIDE SERVICES AND RESOURCES BY PIVOTING TO MANY NEW PROGRAMS AND PLATFORMS. EDUCATION TO THOSE WITH LUPUS WAS AT THE HELM OF OUR PROJECTS, HERE WE IMPLEMENTED STATEWIDE DIGITAL PROGRAMMING THAT BROUGHT PHYSICIANS AND PATIENTS TOGETHER SERVING HUNDREDS ALL AT ONE TIME. WE HELD TWO STATEWIDE EDUCATIONAL CONFERENCES. THIS RESULTED IN US INVESTING IN TECHNOLOGY UPGRADES AND LEANING ON THE STAFF TO LEARN TO USE THE NEW TECHNOLOGIES SWIFTLY AND ACCURATELY. HERE AT THE FOUNDATION TOOK THE POSITION THAT WE WOULD WANT TO SUPPORT THE STAY-AT-HOME EFFORTS, AND IMMEDIATELY SWITCHED ALL OF PROGRAMMING TO DIGITAL AVENUES. THIS INCLUDED MONTHLY SUPPORT GROUPS ACROSS THE STATE., CLASSES FOR THE NEWLY DIAGNOSED PATIENTS, CLASSES FOR YOUNG LUPIANS, PHYSICIANS "ASK THE EXPERT SERIES" THAT WERE PRESENTED MONTHLY AND WE ADDED A PRAYER GROUP FOR THOSE THAT LEAN ON PRAYER. TO STAY ENGAGED AND TO BUILD TRUST AMONGST THOSE WE SERVE WE CREATED OTHER WAYS TO STAY CONNECTED. WE STARTED WITH THE FIRST EVER DIGITAL LUPUS MAGAZINE. THESE WENT TO OVER 5000 CONSTITUENTS IN OHIO AS TO WELL OVER 300 PRINT COPIES TO PHYSICIANS WAITING ROOMS. WE INTRODUCED OUR FIRST EVER POD CAST "THE LUPUS LIVING ROOM- AND "LUPUS NIGHT LIGHT BLOG. WE HAVE ADDED TO OUR WEBSITE A RESOURCE TOOL KIT NOT ONLY FOR PHYSICIANS BUT FOR CAREGIVERS AND LUPUS PATIENTS. THIS IS A CONSTANT BREATHING PROJECT. WE ARE CONSTANTLY ADDING AND UPDATING RESOURCES. WE ARE MOST PROUD THAT WE TRAINED OVER 30 PATIENT NAVIGATORS FROM ACROSS THE STATE OF OHIO. THIS ENSURES THAT THERE IS A ON THE GROUND PERSON THAT IS TRAINING AND IS WILLING AND ABLE TO ASSIST THE PATIENTS AND THEIR FAMILY IF NEEDED. THESE NAVIGATORS HAVE QUARTERLY TRAINING WITH THE LATEST AND MOST ACCURATE INFORMATION AND UPDATES THERE IS ABOUT LUPUS. THEY ASSIST WITH EDUCATION, SUPPORT AND RESOURCES. WE CONTINUE TO SUPPORT RESEARCH AND HAVE A STRONG ADVOCACY INITIATIVE TO HELP SUPPORT TO FIND THE CAUSES AND CURE FOR LUPUS AND BETTER TREATMENTS. DURING THE PANDEMIC WE STARTED "WELLNESS CHECK IN CALLS". WE WANT TO STAY CONNECTED, ESPECIALLY TO THOSE THAT MIGHT BE ISOLATED AND NEED HELP. WE WERE ABLE TO CONTINUE AWARENESS CAMPAIGNS ACROSS THE STATE BECAUSE WE KNOW THAT MOST PEOPLE WERE HEARING NEGATIVE THINGS ABOUT LUPUS AND WE FELT THE NEED TO EDUCATION THE PUBLIC WHILE THE DRUG HYDROQUINIDINE WAS BEING TOUTED AS CURE FOR COVID. WE INVESTED RESOURCES ON ALL THE MAJOR SOCIAL PLATFORMS TO EDUCATE, SUPPORT AND TO STAY CONNECTED TO THOSE IMPACTED BY LUPUS. MUCH WORK WAS DONE AND THE QUALITY AND QUANTITATIVE WERE BEYOND OUR IMAGINATION DURING THIS PANDEMIC.
HELP CHILDREN IMPACTED BY LUPUS. THIS IS ESPECIALLY REWARDING - AND CHALLENGING TOO. THERE IS LITTLE BEING DONE FOR CHILDREN DIAGNOSED WITH LUPUS, BUT THE LFA, GOC IS MAKING STRIDES. WE SUPPORT A BI-MONTHLY PEDIATRIC PEER GROUP WITH NATIONWIDE CHILDREN'S HOSPITAL IN COLUMBUS. IN 2018 WE ALSO WORKED WITH CINCINNATI CHILDREN'S HOSPITAL TO SUPPORT CAMP JOY IN CLARKSVILLE AND FORMED A PEDIATRIC LUPUS COALITION TO HELP ADVOCATE FOR LUPUS PATIENTS NEEDS AND RIGHTS IN THE 2018 LUPUS ADVOCACY SUMMIT.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Tierney Suzanne | PRESIDENT/CE | 40 | $61,132 |
| Maria Woyma | CHAIRMAN OF | 4 | $0 |
| Mark Wester | TREASURER | 4 | $0 |
| Jeannine Valenti | DIRECTOR | 2 | $0 |
| Greg Tavrell | DIRECTOR | 2 | $0 |
| Anthony Sagaris | DIRECTOR | 2 | $0 |
| Diana Fleming Msn | SECRETARY | 4 | $0 |
| Stanley Ballou Md | MEDICAL ADVI | 2 | $0 |
| Natalie Lindsay-Smith | DIRECTOR | 2 | $0 |
| Lisa Bordner | DIRECTOR | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202100469349300605_public.xml