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American Fibromyalgia Syndrome
Tucson, AZ · EIN 770355224 · Form 990 · FY2021 · NTEE H99Z · Medical Research · Micro (<$100K) · www.afsafund.org
revenue
$58K
expenses
$8K
net assets
$979K
employees
0
volunteers
4
program ratio
31%
mission · from form 990

Fund superior quality scientific studies on fibromyalgia syndrome.

profile · synthesized from sources

American Fibromyalgia Syndrome Association (AFSA) is a nonprofit organization dedicated exclusively to funding scientific research on fibromyalgia. While recognizing the importance of education and advocacy, AFSA prioritizes advancing the biological understanding of fibromyalgia to improve treatments. The organization supports studies investigating neurological, immunological, and genetic mechanisms underlying the condition.

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 · 2 groups

what they do

  • Fibromyalgia and Energy Medicine Research 8 activities
    • Conducting Fibromyalgia Research Studies
      Conducts its own research studies to investigate various aspects of fibromyalgia, such as genetic factors, pain thresholds, brain inflammation, and the impact of immune challenges. This includes genetic studies comparing dopamine receptor variants, measuring thermal pain thresholds, and brain imaging studies to assess microglia activation and metabolic processes.
    • Fibromyalgia Tissue Donation Program
      The 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.
    • Fibromyalgia Tissue Donation Program
      Initiates and expands a tissue donation program for fibromyalgia research, which has enrolled over 170 fibromyalgia patients and matched controls by 2011.
    • Funding Fibromyalgia Research Studies
      Funds research studies focused on various aspects of fibromyalgia, including genetic predispositions, immune system involvement, neuroinflammation, potential biomarkers, and treatment efficacy. The organization has funded numerous projects, including six new research studies in 2024 and 2025, and allocates up to $270,000 in total funding for research grants.
    • Funding Fibromyalgia Research Studies
      The 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.
    • Providing Fibromyalgia Information and Self-Management Strategies
      The 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.
    • Publishing Research Findings
      The 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.
    • Publishing Research Findings
      Publishes findings from its funded and conducted research in scientific journals and reports. This includes publishing brain imaging data after immune challenges and reports on abnormal immune system responses in women with fibromyalgia.
  • Uncategorized 1 activity
    • Providing Fibromyalgia Treatment Information
      Compiles and disseminates information on fibromyalgia treatments and management strategies to the public. This includes expert interviews, patient-friendly articles, and guidance on therapies like trigger point massage, hot water therapies, topical pain relief, TENS devices, and activity scheduling.
financials · form 990 · fy2021
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.