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Peggy Lillis Foundation
Brooklyn, NY · EIN 814663562 · Form 990 · FY2024 · NTEE E70 · Health Care · Small ($100K-$1M) · cdiff.org
revenue
$394K
expenses
$357K
net assets
$21K
employees
2
program ratio
63%
mission · from form 990

Building a nationwide colostridium difficle awareness movement by educating the public empowering advocates and shaping policy

profile · synthesized from sources

The Peggy Lillis Foundation builds national awareness of Clostridioides difficile (C. diff) infections through public education, advocacy, and scientific collaboration. It serves patients, healthcare providers, and policymakers by promoting early diagnosis, responsible antibiotic use, and improved infection control. The organization operates nationwide with a focus on reducing preventable harm from C. diff in healthcare and community settings.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $6K
    In 2024 we held out inaugural C. diff Scientific Symposium. The virtual event brought together clinicians scientists, nurses, pharmacists, industry professionals, and patients to intermingle and hear from 23 speakers for a day of collaboration and discovery. Ranging in topics from the Epidemiology of C. diff to Health-Related Quality of Life with CDI, attendees were able to hear updates on a wide variety of topics and learn about cutting-edge research, innovative treatments, and new prevention strategies. A highlight of the day was hearing directly from patients who courageously shared their experiences through powerful testimonials. (Schedule O).
  2. #2 $2K
    This year, our campaign these was See C. diff Diagnosed and centered around the critical need for early and accurate diagnosis of C. diff. As part of this campaign, we highlighted the 4 Elements of Diagnosing C. diff Infections, ranging from patient history to imaging. The campaign underscored the need for better understanding of C. diff diagnostic tools and equitable access, driving home that accurate diagnosis is the first step in treatment. We were able to engage millions across our social media channels and website. Peggy Lillis Foundation CEO Christian John Lillis and several PLF Advocates were featured across several notable outlets, such as CDC Safe Healthcare Blog, Pharmacy Times and Medscape.
named programs · 4 · from sources

What they call their work

C. diff Scientific Symposium
Annual virtual event convening clinicians, scientists, patients, and industry professionals to share research, treatment innovations, and prevention strategies on C. diff.
See C. diff Diagnosed Campaign
Public awareness campaign focused on early and accurate diagnosis of C. diff, highlighting the four elements of diagnosis and promoting equitable access to testing.
See C. diff Public Education Campaign
National outreach initiative to increase public awareness of C. diff, reaching over one million Americans in 2021 and generating hundreds of millions of impressions.
Virtual Summit
Multi-day virtual conference featuring presentations and breakout sessions on C. diff education, advocacy, accountability, vaccine development, and healthcare policy.
activities · 6 groups

What they do

  • Disease-Specific Clinical & Patient Education 2 activities
    • Development and distribution of patient education materials
      Produces and distributes free downloadable guides including the C. diff Care Guide, Lifestyle & Nutrition Guide with survivor-developed recipes, and myth-busting resources to support patient education, infection management, and caregiver support.
    • Public awareness campaigns on C. diff infection
      Launches and runs public education campaigns such as "See C. diff" and "See C. diff Diagnosed" to increase public and clinical awareness of Clostridioides difficile infection, with documented reach of over 16 million people in 2022 and more than 950 million impressions in 2021.
  • Scientific Conference & Symposium Management 1 activity
    • Convening of national summits and scientific symposia
      Hosts annual Virtual Summits and the 2024 C. diff Scientific Symposium featuring presentations and breakout sessions for healthcare professionals, scientists, patients, and advocates to advance education and collaboration on C. diff.
  • Peer-Led Mental Health Support Groups 1 activity
    • Peer support networks and emotional support services
      Operates a moderated Facebook support group, a peer support network connecting individuals with C. diff survivors or caregivers, and a Speaker's Bureau that trains volunteers to provide emotional support, resource sharing, and public education.
  • Healthcare Policy Advocacy 1 activity
    • Policy advocacy and coalition leadership for C. diff surveillance
      Leads coalitions of nonprofits, industry partners, and individuals to improve tracking of C. diff and other healthcare-associated infections; organizes annual Lobby Day events on Capitol Hill and participated in FDA Patient Listening Sessions to inform regulatory policy.
  • Medical Professional Education & Training 1 activity
    • Training and capacity building for advocates and healthcare workers
      Hosts an annual C. diff Summit in Washington, D.C. to train volunteers in advocacy, education, and patient support; conducts workshops and presentations for healthcare workers nationwide on C. diff topics.
  • Uncategorized 1 activity
    • Research dissemination and collaboration on antibiotic stewardship and microbiome therapies
      Supports and disseminates research on microbiome-based treatments like VE303 for recurrent C. diff; facilitated dissemination of Phase II trial results and collaborated with AHRQ to develop the "Four Moments of Antibiotic Decision Making" tool to improve antibiotic use.
financials · form 990 · fy2024
revenue
Total revenue$394K
Contributions & grants$333K85%
Program service revenue$00%
Investment income$00%
Other revenue$61K
expenses
Total expenses$357K
Program expenses63%
Admin / overhead21%
Fundraising16%
Salaries & benefits$168K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$45K
Cash$18K
Investments$0
Liabilities$25K
Net assets$21K
Liquid reserves0.6 mo
4 years on record · 2020–2024 · YoY revenue -5.3%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
CHRISTIAN JOHN LILLIS Executive Director 40 $110K
board members · 9
  • BRUCE HIRSCH — Board Member
  • CAROL RAYE — Board Member
  • DAVID SHLAES — Board Member
  • DEBORAH TRINKER — Board Member
  • HELEN BEIGEL RN — Board Member
  • KENNETH LAWRENCE PHARMD — Board Member
  • PAUL FEUERSTADT MD — Board Member
  • VICTORIA NEWMAN — Board Member
  • VINCENT YOUNG MD — Board Member
relationships · 31

Who they work with

  • Agency for Healthcare Research and Quality Partner — Collaborated with PLF to develop the "Four Moments of Antibiotic Decision Making" tool.
  • American College of Gastroenterology Partner — Collaborates with PLF in providing clinical guidance on C. diff treatment and prevention
  • American Gastroenterological Association Partner — Collaborates with PLF in providing clinical guidance on C. diff treatment and prevention
  • CDC Partner — Collaborated with CDC through media features on the CDC Safe Healthcare Blog as part of public education campaigns.
  • Centers for Disease Control Government — References CDC surveillance programs and data on Clostridioides difficile infection
  • Centers for Disease Control and Prevention Government — Recognized PLF with the Excellence in Partnership award in 2013.
  • Facebook Partner — Hosts a moderated support group for C. diff patients and survivors.
  • Food & Drug Administration Government — PLF participated in FDA's first Patient Listening Session for C. diff to inform regulatory decisions.
  • Grady Health System Partner — Collaborated with PLF advocates at the 2023 Lobby Day.
  • Infectious Diseases Society of America Partner — Collaborates with PLF in providing clinical guidance on C. diff treatment and prevention
  • Making A Difference in Infectious Diseases Partner — Partnered with PLF on presentations and workshops for healthcare workers.
  • Medscape Partner — Featured on Medscape to expand reach of C. diff awareness and diagnostic best practices.
  • MetroHealth System Partner — Cites MetroHealth System's hand hygiene campaign as a successful model for reducing healthcare-associated infections
  • Mount Sinai Health Partner — Christian has presented to Mount Sinai Health on C. diff advocacy and prevention.
  • National Quality Forum Partner — Christian has presented to the National Quality Forum on C. diff advocacy and prevention.
  • National Quality Forum Partner — Partnered with PLF on presentations and workshops for healthcare workers.
  • Oregon Health Authority Partner — Pam, a PLF advocate, serves on the Oregon Health Authority's Healthcare Acquired Infection Advisory Committee.
  • Peggy Lillis Foundation Partner — Operates the C. Diff Support peer support network in partnership with the website operator.
  • Pharmacy Times Partner — Featured in Pharmacy Times as part of public outreach and awareness efforts for C. diff diagnosis and prevention.
  • Presidential Advisory Council on Combating Antibiotic Resistant Bacteria Partner — Christian has presented to the Presidential Advisory Council on Combating Antibiotic Resistant Bacteria.
  • Science37 Partner — Partners with Science37 to support decentralized, remote participation in the RESTORATiVE303 clinical trial for recurrent C. difficile infection.
  • Society for Healthcare Epidemiology of America Partner — Collaborates with PLF in providing clinical guidance on C. diff treatment and prevention
  • University of Arizona Partner — Collaborates on research related to C. diff risk factors.
  • University of Cincinnati Partner — Collaborates on research related to C. diff risk factors.
  • Vedanta Biosciences Partner — Collaborates with Vedanta Biosciences to promote research and access to VE303, an investigational microbiome therapeutic for recurrent C. difficile infection.
  • World AMR Congress Partner — Partnered with PLF on presentations and workshops for healthcare workers.
  • industry leaders Partner — Partners with industry leaders to support the See C. diff awareness campaign.
  • industry partners Partner — Collaborates with industry partners as part of a coalition to improve counting of C. diff and other HAIs
  • leading nonprofits Partner — Partners with leading nonprofits to expand reach of the See C. diff awareness campaign.
  • nonprofits Partner — Collaborates with nonprofit organizations as part of a coalition to improve counting of C. diff and other HAIs
+ 1 more
strategies · 4

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.

  • Microbiome Restoration as a Clinical and Educational Priority
    methodology: microbiome_restoration
    By advocating for microbiome restoration in recurrent C. diff cases, we support long-term recovery, because microbial diversity is clinically essential to preventing recurrence and reflects a deeper understanding of gut health as a treatable variable.
  • Multi-Stakeholder Systems Change to Reduce C. diff Infections
    methodology: multi-stakeholder public health intervention
    By coordinating action among healthcare providers, institutions, policymakers, and the public, we address root causes of C. diff including antibiotic use, sanitation, and surveillance, because systemic problems require integrated clinical, institutional, and policy-level interventions to achieve sustained reduction in infection rates.
  • Peer Support Networks to Enhance Patient Resilience and Engagement
    methodology: peer_support_network
    By connecting patients with peers who have lived experience of C. diff, we improve emotional resilience and practical navigation of care, because shared experience increases trust, reduces isolation, and promotes effective resource use without replacing clinical treatment.
  • Public Awareness and Storytelling to Drive Prevention and Policy Change
    methodology: public_awareness_campaign
    By using survivor stories, myth-busting, and multi-channel media campaigns, we increase public and professional understanding of C. diff, because heightened awareness leads to earlier prevention, improved patient outcomes, and greater political will for systemic change.