irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $15KANOTHER PROGRAM, DES ACTION "DESACTION.ORG", WAS FORMED TO IDENTIFY, EDUCATE, EMPOWER AND ADVOCATE FOR INDIVIDUALS EXPOSED TO DIETHYLSTILBESTROL, THE FIRST SYNETHETIC ESTROGEN CREATED. THIS INFORMATION IS PROVIDED AT NO COST TO THE PUBLIC.
named programs · 2 · from sources
What they call their work
DES Action
Program focused on identifying, educating, empowering, and advocating for individuals exposed to diethylstilbestrol (DES), a synthetic estrogen with long-term health consequences.
MedShadow.org
Core educational platform publishing in-depth articles, investigative reports, and expert interviews on medication risks, side effects, and alternatives across numerous health conditions.
activities · 5 groups
What they do
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Medical Research & Education Dissemination 2 activities
- Conduct investigative research on medication safety and drug regulationConducts and publishes investigative reporting and research on issues including generic drug quality variability, opioid supply chain flaws, patient experiences with ADHD and Alzheimer’s medications, SSRI side effects, and supplement safety. Findings have prompted follow-up academic analysis and informed public discourse.
- Produce educational materials on medication and health topicsCreates and publishes evidence-based videos, downloadable guides, webinars, and a medical glossary to help patients understand drug safety, side effects, supplements, and integrative health approaches. Includes practical tools such as checklists for adverse event reporting and supplement selection.
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Healthcare Policy Advocacy 1 activity
- Advocate for systemic reforms in drug safety and regulationEngages in advocacy to stimulate public discourse on reforming drug manufacturing and FDA oversight, including supporting expert reform proposals, translating FDA safety updates for public understanding, and appointing consumer representatives to FDA advisory committees.
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Reproductive Health Advocacy & Education 1 activity
- Operate DES Action USA to support individuals exposed to DESOperates DES Action (desaction.org) to identify, educate, empower, and advocate for individuals exposed to diethylstilbestrol, a synthetic estrogen, by providing information and resources at no cost to the public.
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Nonprofit Investigative & Community Journalism 1 activity
- Produce and distribute independent journalism on medication safetyProduces explanatory and investigative journalism on medication benefits, side effects, recalls, and safety issues, publishing in a weekly newsletter and podcast series to inform the public and stimulate discussion. Content is distributed freely and avoids pharmaceutical or supplement industry funding.
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Uncategorized 1 activity
- Maintain a public database of FDA medication safety updatesMaintains and updates a database of FDA information on medication recalls, manufacturing violations, and quality concerns to support public awareness and patient safety.
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financials · form 990 · fy2024
revenue
Total revenue$1.84M
Contributions & grants$1.90M103%
Program service revenue$00%
Investment income$-58K-3%
Other revenue$0
expenses
Total expenses$1.61M
Program expenses77%
Admin / overhead22%
Fundraising1%
Salaries & benefits$857K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$587K
Cash$131K
Investments$365K
Liabilities$54K
Net assets$533K
Liquid reserves3.7 mo
6 years on record · 2019–2024 · YoY revenue +20.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| DIANE SALVATORE | EXECUTIVE DIRECTOR | 40 | $180K |
board members · 8
- BRYNNE HAWRYLAK — HUMAN RESOURCES CHAIR
- CHRISTOPHER FOSTER — DEVELOPMENT CHAIR
- CINDY PEARSON — STRATEGY CHAIR
- KARI CHRISTIANSON — DES ACTION CHAIR
- KATHERINE ACCERA — WRC ENGAGEMENT
- ROBERT E ROBOTTI — TREASURER
- SUZANNE ROBOTTI — PRESIDENT
- TERENCE KANNENGIESER — FINANCE CHAIR
relationships · 19
Who they work with
- Centers for Disease Control and Prevention Government — References CDC as a key agency monitoring vaccine safety in the United States.
- ConsumerLab.com Partner — Referenced as a third-party organization that tests and certifies dietary supplements.
- DES Action Partner — Collaborates with DES Action (desaction.org) to serve individuals exposed to diethylstilbestrol through education, identification, empowerment, and advocacy.
- DES Action USA Partner — Assumed management and operational oversight of DES Action USA in 2014; shares a mission to educate the public about medication side effects.
- DES Action USA Partner — Collaborates with DES Action USA, taking over management of their member organization and working as its President.
- Dr. Lillie Rosenthal Partner — Hosts the "Power to the Patient" podcast and serves on MedShadow Foundation's Health and Medical Advisory panel.
- Drug Safety and Risk Management Advisory Committee Government — MedShadow's founder serves as the appointed consumer representative on this FDA advisory committee.
- FDA Government — Connects patients to the FDA’s MedWatch adverse event reporting system.
- FDA Government — Sources safety updates and recall information from the FDA's Drug Safety Database.
- Food and Drug Administration Government — Directs patients to report drug side effects through the FDA's MedWatch program.
- Food and Drug Administration Government — References FDA as the primary authority for pharmacovigilance and drug approval in the United States.
- Kantar Partner — Collaborated with MedShadow Foundation on a national survey about public perceptions and experiences with generic drug effectiveness.
- Lancet Network — References and analyzes findings from a major meta-analysis published in The Lancet on statin side effects
- Mount Sinai Partner — Collaborates with Heather Viola, D.O., who provides expert commentary on supplement safety and regulation.
- National Institutes of Health Government — References NIH as conducting additional research on drug safety in the United States.
- National Sanitation Foundation Partner — Referenced as a third-party organization that certifies supplement quality and purity.
- Stanford Prevention Research Center Partner — Collaborates with Marily Oppezzo, Ph.D., who contributes expertise on supplement effectiveness and third-party testing.
- United States Pharmacopeia Partner — Referenced as a third-party organization that verifies supplement quality and labeling accuracy.
- leading Ph.D. Partner — Collaborates with a leading Ph.D. to present evidence-based information on alternative treatments in educational webinars.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Independent, Unbiased Drug Safety Reportingmethodology: independent_journalismBy producing journalism that is free from pharmaceutical and supplement industry funding, MedShadow ensures unbiased reporting on medication risks and benefits, thereby fostering public trust and enabling informed health decisions because independence from corporate influence reduces bias in health information.
- Patient Empowerment Through Health Literacy and Self-Monitoringmethodology: health-literacy-empowermentBy improving health literacy through accessible information and encouraging patients to monitor their own symptoms and medication effects over time, MedShadow enables earlier detection of adverse events and more informed decision-making because engaged, informed patients are better equipped to identify risks and advocate for themselves.
- Public Education on Medication Risks and Integrative Healthmethodology: public_educationBy educating the public about the long-term effects of medications, limitations of clinical trials, and evidence-informed integrative practices, MedShadow promotes safer medication use and holistic resilience because awareness of both pharmaceutical risks and complementary approaches leads to more balanced health decisions.