2019–2020 Strategic Plan | Executive Summary

Peggy Lillis Foundation: Fighting the Urgent Threat of C. diff

Founded in 2010 by the family of 56-year old Kindergarten teacher Margaret “Peggy” Lillis who died from a Clostridioides difficile infection (CDI), Peggy Lillis Foundation (PLF) is excited to share our strategic plan to advance the movement to fight C. diff in 2019–2020.

An Urgent Threat.
C. diff, classified as an urgent public health threat by the Centers for Disease Control, causes 500,000 infections (including 17,000 in children), 28,000 deaths and more than $3 billion in excess medical costs annually. Despite nearly 10% of patients admitted to hospitals being asymptomatic carriers of C. diff, only 33% of Americans have ever heard of it.

Our Solution.
PLF is the preeminent, nationally recognized leader for C. diff patient advocacy and public education and trusted by patients, families, healthcare professionals, industry and philanthropic organizations. We are leading a growing movement to end the harm caused by C. diff.

A Renewed Strategic Direction: PLF is THE Patient-Focused Leader

PLF puts patients and families front and center in the fight against C. diff. Central to our effectiveness is this focus on those harmed by C. diff and their loved ones as we spread C. diff awareness and call people to action. In 2019, we will further distinguish PLF as the patient-focused leader.

PLF’s 2019–2020 Strategic Plan leverages our unique strengths:

  • Broad recognition as a trusted leader in the fight against C. diff
  • Through our Advocates Council, C. diff survivors and family members are at the center of all that we do
  • A bold approach to awareness and tools that inform, support, and advocate for change
  • Engaging events: Annual National C. diff Summit and sole Lobby Day in Washington D.C.; the largest annual fundraiser for CDI: FIGHT C. DIFF
  • Strong partnerships with coalitions, advocacy groups, medical professionals, industry, and donors

Goal 1: Engage A Broader Audience in Change

In 2019, PLF wants to reach out to new and larger audiences. To do this we will increase promotion of our executive director as an expert, armed with a public policy agenda for ending the urgent threat of C. diff. We will launch a new advocacy campaign to coincide with C. diff Awareness Month in November 2019. The campaign will leverage U.S. Antibiotic Awareness Week and the holiday season to enlist new partners and reach new demographics. The campaign will feature a series of demographic-specific story frames to demonstrate how C. diff and antibiotic resistance can affect anyone.

By 2021, PLF will be better positioned to collaborate with at-risk populations, healthcare workers, policymakers and other new audiences. We will enhance our Advocates Council members ability to tell their story through social media and public speaking, to encourage even more advocacy and education.

Goal 2: Empower Advocates to Combat the C. diff Epidemic

PLF has over 900 C. diff survivors and their families active in our work. In 2019, we will train and support authentic, powerful and semi-autonomous advocates who can lead locally and nationally. To that end, PLF will develop materials, trainings and a structure for Advocate Council members to be fully engaged in activities such as public speaking, fundraising, content creation, and helping patients in need of information and support.

Through this investment in our volunteers, PLF exponentially strengthens the movement to fight C. diff. By 2020, well-trained and supported Advocates Council members will lead awareness and patient advocacy campaigns on the local and state levels, as well as new programs (i.e. Patient Support, mentoring new advocates, and peer-to-peer fundraising).

Advocates at 2018 Summit in DC

Goal 3: Shape Policy at Every Level

PLF became a national leader, in part, because of our effective advocacy work on behalf of the 500,000 patients harmed by C. diff every year. In 2019, we are expanding our “Make C. diff Count”

campaign to a robust and clearly defined set of achievable policy goals to end the C. diff epidemic.

PLF will explore and test a potential state legislative campaign and host a Summit and Lobby Day in either New York or California by 2020. PLF will continue to participate in coalitions pushing for needed federal antimicrobial resistance funding, policies and regulations. We work alongside entities such as quality improvement organizations, long-term care ombudsman and professional association chapters striving for decisive action on infectious disease surveillance and prevention from the local to the national level.

Goal 4: Building Capacity to Meet the Threat of C. diff

Since 2010, PLF has grown from primarily a reliable source of information for patients and caregivers into a trusted leader of how to end the C. diff epidemic. To support this growth, PLF will seek out untapped philanthropic and corporate funding. PLF will continue to recruit board members with new expertise and networks, establish Advocates Council Co-Chairs as ex-officio members of the board, and launch a Scientific Advisory Council in 2019.

To fight C. diff we need an all-hands-on-deck approach that involves changing how and when antibiotics are prescribed, ensuring C. diff infection cases are accurately recorded, healthcare facilities are held accountable, robust prevention efforts, and for scientists to push for innovative treatments.

Most of all, we need swift and decisive action to ensure that we are responding to the C. diff epidemic and saving lives.

Join us in the fight against C. diff.

Contact Christian John Lillis at christian [@] peggyfoundation.org.