named programs · 2 · from sources
what they call their work
Establishing a Fibromyalgia Tissue Donation Program
Initiated a post-mortem tissue donation program to enable direct study of central nervous system tissue from fibromyalgia patients and matched controls; served as proof of concept for larger NIH funding
Fibromyalgia Research Grant Program
Funds scientific studies investigating the biological mechanisms of fibromyalgia, including neuroinflammation, genetics, immune function, and potential therapies such as LDN, TMS, and CES
activities · 4
what they do
direct service · 1
- Providing Fibromyalgia Information and Self-Management StrategiesThe organization compiles and disseminates information from experts and researchers to help individuals understand fibromyalgia science and advances, and provides practical guidance on self-management techniques such as trigger point massage, hot water therapies, topical pain relief, TENS devices, and activity scheduling.
research · 3
- Fibromyalgia Tissue Donation Program Funding and Support for Disease-Specific Clinical ResearchThe organization initiated and expanded a tissue donation program for fibromyalgia research, enrolling over 170 fibromyalgia patients and matched controls by 2011 to facilitate further studies.
- Funding Fibromyalgia Research Studies Funding and Support for Disease-Specific Clinical ResearchThe organization funds research studies focused on various aspects of fibromyalgia, including genetic predispositions, immune system involvement, neuroinflammation, potential biomarkers, and treatment efficacy. This includes funding specific projects and trials, and allocating up to $270,000 in total funding for research grants.
- Publishing Research FindingsThe organization publishes findings from its funded research projects in scientific journals and reports, contributing to the broader understanding of fibromyalgia. This includes reports on immune system responses and endotoxemia studies.
strategies · 4
how they think
Theories of action extracted from this org's own source material. Click any approach shared with other orgs to see the full field.
- Comprehensive, multi-modal symptom management guidance combination_therapy unique to this orgAdvocates for a holistic approach to fibromyalgia management that integrates CNS medications, non-drug therapies, self-help strategies, lifestyle modifications, and mental resilience to improve patient control and well-being.
- Patient empowerment through evidence-based education research-based_patient_education unique to this orgTranslates scientific research and expert insights into accessible, patient-friendly resources to validate patient experiences, improve understanding of fibromyalgia, and support informed healthcare decision-making.
- Seed funding for high-impact fibromyalgia research research_acceleration unique to this orgFunds targeted, hypothesis-driven research to generate preliminary data that enables scientists to secure larger government grants, accelerating medical discoveries in fibromyalgia.
- Targeted biological research on microglia and pain pathways microglia-targeted_research unique to this orgFocuses research on microglia activation, genetic influences on neurotransmitter systems (serotonin/dopamine), and immune challenges to identify biomarkers and treatments that target central nervous system dysfunction in fibromyalgia.
financials · form 990 · fy2021
the money
revenue
Total revenue$58K
Contributions & grants$58K100%
Program service revenue$00%
Investment income$320%
Other revenue$0
expenses
Total expenses$8K
Program expenses31%
Admin / overhead69%
Fundraising0%
Salaries & benefits$0
Grants paid out$0
Largest expense lineFacilities
balance sheet
Total assets$979K
Cash$979K
Investments$0
Liabilities$0
Net assets$979K
Liquid reserves1390.8 mo
3 years on record · 2019–2021 · YoY revenue -4.2%
leadership · form 990 part vii · fy2021
who runs it
board members · 4
- Brent Songer — Director
- Jennifer E Randle — Chief Financial Officer
- Kristin Thorson — President
- Steve Thorson — Vice President & Secretary
relationships · 16
who they work with
- Alan Light, Ph.D. Partner — Principal Investigator for a project funded by AFSA.
- Banner Health Partner — Acquired SHRI near the end of 2011 and cancelled the fibromyalgia tissue donation program.
- Emory University Partner — Anna Woodbury, M.D., M.Sc., from Emory University is evaluating cranial electrical stimulation (CES) for fibromyalgia.
- Jarred Younger Partner — Principal Investigator for a study on detecting brain inflammation in fibromyalgia.
- Jarred Younger Partner — Principal Investigator for funded research on Low-Dose Naltrexone (LDN) for treating fibromyalgia.
- Jarred Younger, Ph.D. Partner — Principal Investigator for the "Brain Response to Immune Challenge" project.
- Kristin Thorson Partner — President and Founder of AFSA, assists potential applicants and facilitates the grant review process.
- NIH Funder — Awarded a grant to Alan Light based on data from an AFSA-funded project.
- NIH Funder — Linda Watkins, Ph.D., and Dianne Lorton, Ph.D., received a 5-year grant from NIH to continue their tissue donation program after initial funding from AFSA.
- National Institutes of Health Government — AFSA funds preliminary research to help scientists secure larger grants from NIH.
- Sean Mackey Partner — Principal Investigator for funded research on Low-Dose Naltrexone (LDN) for treating fibromyalgia.
- Stanford University Partner — Institution where the funded research on Low-Dose Naltrexone (LDN) for treating fibromyalgia was conducted.
- University of Alabama at Birmingham Partner — Affiliation of the Principal Investigator, Jarred Younger, Ph.D.
- University of Alabama at Birmingham Partner — Institution where the Principal Investigator, Jarred Younger, is based for the brain inflammation study.
- University of Sherbrooke Partner — Hosts the principal investigator for an AFSA-funded research study on genetic influences on the pain control system.
- University of Utah Partner — Institution where Principal Investigator Alan Light, Ph.D. is based.