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Our Accomplishments

2022

See C. diff Reaches 20 Million!

  • November 2022 marked our most successful “See C. diff” campaign ever! We smashed our goals, reaching more than 16 million people during C. diff Awareness month. This unprecedented reach was due to efforts to focus on mainstream outlets for earned media coverage. Our major wins in earned media included features by Forbes, CIDRAP, Livestrong, STAT News, CDC, and many others. We are grateful to Kafka Media Group for helping us generate so much coverage of C. diff. Thanks to years of advocating at the Centers for Disease Control and Prevention (CDC), their increased involvement in C. diff Awareness Month this year contributed to over 9 million reached with the hashtag #cdiffawarenessmonth, almost double the reach in November 2021.

Giving Back to Patients and Families

  • In May of 2022, PLF launched the C. diff Peer Support Network, where volunteers (C. diff survivors and caregivers) provide emotional support and assistance in getting proper treatment and navigating recovery. Over 30 individuals had received support by the end of 2022.

A Guide You Can Sink Your Teeth Into

  • In July of 2022, PLF released the C. diff Lifestyle and Nutrition Guide, featuring information on diet and nutrition and including over 20 recipes and self-care for those with C. diff infections and those in recovery. The Guide was written jointly by Registered Dietitian Shauna McQueen and C. diff Advocates, and reviewed by the PLF Scientific Advisory Council for medical accuracy.

PLF in the News

Peggy Lillis Foundation was featured in several prominent health media outlets in 2022, including:

New Educational Materials

  • PLF released a new patient education and promotional flier, including information on C. diff infections and PLF patient resources, to be distributed in participating physician offices.

PLF at IDWeek

  • PLF, with partners NTMInfo and Sepsis Alliance, participated in the 2022 IDWeek, a multi-day conference in Washington, D.C., where healthcare professionals and industry members meet to further the field of infectious disease. PLF staff enhanced their knowledge and expertise and established critical connections with infectious disease specialists, researchers, and healthcare professionals. IDWeek was a great opportunity to help us improve our programs, develop new initiatives, and ultimately make a greater impact in the fight against C. diff infections.

Empowering Advocates

  • PLF convened its seventh annual C. diff Advocacy Summit in May of this year in Washington, D.C., with Advocates and experts from across the country meeting to discuss C. diff advocacy, education, and policy. A full recording of all 2022 summit presentations can be found on our YouTube channel. Some notable presentations were:
    • “Lessons from the HIV Movement: Communication for Health Justice” from writer and activitist Kenyon Farrow.
    • “State Law Mandates for Reporting C. diff: a Ten Year Review” from Dr. Julie Reagan, PhD.
    • “Access to New Treatments and Preventatives for C. diff Patients” from panelists Emily Wheeler of BIO, Anna Hyde of the Arthritis Foundation, PLF Advocate Maryann Webb, and moderator Kevin Brennan of Bluebird Strategies.

Advocates Speaking Up

PLF Advocate Kee Kee Buckley presented at the 2022 Making a Difference in Infectious Diseases (MAD-ID) conference in Orlando, FL, speaking on her experience with C. diff and sepsis.

Fighting for New Treatments

PLF Advocates participated in the Food and Drug Administration (FDA) Advisory Committee Hearing on Rebyota (RBX2660) for treating recurrent C. diff infections, sharing their stories and bringing attention to the unmet needs of C. diff patients.

State-Based Advocacy

PLF Advocate Pam McCollister was made a member of the Oregon Healthcare Associated Infections (HAI) Advisory Committee, offering guidance based on her experience with C. diff.

Shaping Policy

  • Following PLF Advocates’ efforts at our Lobby Week in April, language requesting increased surveillance for C. diff was included in the Federal Labor, Health and Human Services, Education, and Related Agencies Fiscal Year 2023 Filed Report. Advocates also lobbied for their representatives to co-sponsor the PASTEUR Act of 2021 and the PREVENT Pandemics Act, and for budgetary increases to the Centers for Disease Control and Prevention (CDC), National Institute of Health (NIH), and Biomedical Advanced Research and Development Authority (BARDA).

PLF Organizes at FDA

  • Following an open letter to the Food and Drug Administration (FDA), Peggy Lillis Foundation was confirmed for a Patient Listening Session in 2023 with interest from three centers at FDA. PLF Advocates and advisors will submit a brief on the unmet needs of C. diff for future product considerations.

PLF leads letter to the White House

  • Peggy Lillis Foundation led a letter, signed by multiple patient advocate groups and infectious disease non-profits, to call on the White House to shift its COVID-19 strategy to protect some of the most vulnerable communities alongside the general public. 

2021

Awareness and Education

See C. diff Reaches 1 Million!

  • In November of 2021, PLF’s second annual “See C. diff” campaign for C. diff Awareness Month reached over 1 million individuals.  We started our “See C. diff” campaign in 2019 to generate broad public awareness of this preventable but often-life threatening infection. In just three years, we’ve increased our reach 1,250%, from 80,000 our first year to over 1,000,000 people in 2021.
  • The critical importance of increasing awareness is captured in this quote from a survivor who responded to the campaign: “The sickest I have ever been is when I had C.diff…I’ve had Ulcerative Colitis for years and started suffering with C.diff in 2016 as a result of complications of my UC…I didn’t realize it was so serious until my gastroenterologist suggested a (fecal) transplant to help me get over C.diff.”
  • PLF kicked off C. diff Awareness Month 2021 by launching a new Public Service Announcement. The goal of the Public Service Announcement was to bring awareness to C. diff and unnecessary antibiotic use. The PSA had hundreds of thousands of views and contributed to the overall success of our 2021 See C. diff Campaign.

PLF in the News

  • PLF Executive Director, Scientific Advisory Council members, and Advocates Council Members were featured in a variety of notable news outlets, including:

Partnering to Support Patients

  • Peggy Lillis Foundation for C. diff Education & Advocacy (PLF), the leading patient organization combating C. difficile infections (CDI), partners with Ferring Pharmaceuticals through a new sponsorship to help fund new and existing patient advocacy initiatives. Joining forces, PLF and Ferring are eager to continue helping people living with CDI and their loved ones.

Guiding Patients Through C. diff

  • In 2021, PLF released the C. diff Care Guide, a comprehensive collection of information to help patients and caregivers understand how to be diagnosed, what treatments are available, what to expect in the case of a severe or recurrent infection, and much more. Sponsored by Bio-K Plus, the guide was developed in consultation with C. diff survivors and caregivers and reviewed for medical accuracy by PLF’s Scientific Advisory Council. The guide is a free resource that has received thousands of downloads to this day.

Empowering Advocates at our 2021 Advocacy Summit 

Peggy Lillis Foundation held our 6th Annual National C. diff Advocacy Summit virtually on April 20 and 22. As always, we had an array of knowledgeable and passionate speakers and presenters committed to the fight against C. difficile infections (CDI). This year’s conference spotlighted C. diff patients and family members and featured two sessions led or co-led by C. diff Advocates, including one on how to enhance the interaction between C. diff patients and clinicians, as well as our first ever “Ask An Advocate Anything.”

Shaping Policy

  • Peggy Lillis Foundation convened the third annual C. diff Lobby Day on April 21, 2021. The date had special resonance for our community, being the 11th anniversary of our namesake’s death. Twenty-seven volunteers from PLF’s Board, Advocates Council, and Scientific Advisory Council met with their Members of Congress. We coordinated more than 40 virtual meetings with House and Senate offices in over 15 states, including Colorado, Florida, Idaho, Maryland, Maine, Michigan, Missouri, New Jersey, New York, Oregon, Pennsylvania, Rhode Island, Utah and Virginia. Advocates sought to raise C. diff awareness among legislators and their staff, as well as urging action on two pieces of legislation: The Public Health Infrastructure Saves Lives Act (PHISLA), and the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act.

2020

Peggy Lillis Foundation:

Awareness and Education:

  • In response to the COVID-19 pandemic, C. diff sufferers and survivors, and caregivers still needed our help. PLF and members of the Scientific Advisory Council collated general information to help guide conversations with healthcare providers concerning COVID-19 & C. difficile infections.
  • PLF Advocates participated in our webinar series. Led by legal scholar Diane Hoffman on the regulation of fecal microbiota transplant; 
  • PLF & Bio-K+ partnered a webinar on Antibiotics, Probiotics & Stewardship in SARS-COV-2 era. 
  • Lynne V. McFarland, PhD wrote a guest Blog on “Choosing the best probiotic for C. diff.”
  • PLFs second annual “See C. diff ” campaign during C. diff Awareness Month reached more than 250,000 Americans, increasing knowledge of C. diff as an urgent public health threat.
  • Our Tenth Annual Fight C. diff Gala also held virtually was uplifted with the theme “C. diff is a Drag” and attended by more than 1,000 people. PLF recognized the incredible work of world health leader Professor Mark Wilcox, and Innovator Teresa Zuckberg and Angus the C. diff sniffing dog. 

Empowering Advocates:

  • Long time Advocate Jeff Pollack was elected President of the Board of Directors, following co-founder Liam Lillis’ decision to step down to focus on being a parent.
  • In light of the COVID-19 pandemic, PLF hosted its Fifth National C. diff Advocacy Summit virtually. While we missed seeing everyone in person, going virtual more than tripled our number of participants.
  • PLF hosted a multipart webinar produced in partnership with Living Proof Advocacy where Advocates learned how to tell their stories to advocate for change in different audience settings, an essential tool for engaging legislators, agencies and associations, healthcare professionals and educating the public. 

Shaping Policy:

  • Advocates Council Co-Chair and Board member Christina Fuhrman testified before the Presidential Advisory Council on Combating Antibiotic Resistant Bacteria.
  • PLF partnered with patient safety organizations and advocates to launch a successful petition urging Centers for Medicare and Medicaid (CMS) to instruct healthcare facilities to resume collecting and reporting quality measures, which was paused, in order to fight against COVID-19.
  • In its continued effort to ensure that all C. diff infections are counted, PLF launched a petition to the Centers for Disease Control to have C. diff designated as a Nationally Notifiable Disease.

2019

Awareness and Education:

Empowering Advocates:

Shaping Policy: 

  • Advocates participated in its Second Annual C. diff Lobby Day event on Capitol Hill, meeting with 50 legislators from 18 states and asking for increased funding to critical agencies combating infectious diseases. We also asked for proper reporting of infections in the US. 
  • PLF Advocates submitted public comments to the American Dental Association, urging a decrease in the use of prophylactic antibiotics.

2018

Awareness and Education:

  • Board Member Jeff Pollack hosted “Music Matters”, a concert in New York City, that raise awareness and funds to fight C. diff. 
  • The Dexter Family held their 5th Annual Judy Dexter Memorial Picnic & Cornhole Tournament raising more than $10,000 for C. diff education and advocacy.
  • PLF launched our Make C. diff Count campaign. Advocates shared their stories highlighting the importance of the campaign.

Empowering Advocates:

  • PLF hosted its C. diff Advocacy Summit in Washington, D.C., bringing together the Advocates Council representing 14 states for three days of education and advocacy, the largest single gathering of C. diff advocates in the US. 
  • PLF also held its first-ever C. diff Lobby Day on Capitol Hill, meeting with 42 legislators.

Shaping Policy:

2017

Educated National Audiences:

  • PLF’s website became the preeminent resource for C. diff patients, families, providers, and policymakers. We had 15,000 visitors from around the globe sharing their stories and downloading PLF resources.
  • PLF’s first academic journal article, “The Dangers of Celebrating Too Early” was published.

Empowering Advocates: 

  • PLF held its second National C. diff Advocacy Summit attended by Advocates and clinical experts, educating advocates on lobbying for infection control, patient safety and antibiotic use, educating healthcare providers. The Summit was live streamed on social media and available on our YouTube channel.
  • Advocate Apryl Gleespend was featured in a new story about fecal microbiota transplant on PBS.
  • Advocate Rich Dexter and the Dexter family held their fourth annual Judy Dexter Memorial Picnic & Cornhole Tournament raising $12,000.

Shaping Policy:

2016

Educated National Audiences:

Empowered Advocates: 

Shaped Policy:

Increased Our Capacity & Built Partnerships:

  • PLF incorporated as an independent 501c3.

2015

Educated National Audiences:

Empowered Advocates:

  • PLF held our first-ever Summit for 30 CDI advocates. Over two days, 20 experts from medicine, microbiology, health care policy, media relations, lobbying, and grassroots activism provided knowledge and skills to these new leaders.
  • In addition to the in-person training that advocates received, the Summit led to a host of enduring tools, including videos of all Summit sessions on PLF’s YouTube channel.

Shaped Policy: PLF stepped up our efforts to impact policy at the federal level through collaboration and our own campaigns, including:

  • Our Executive Director, Christian, attended the June 2015 White House Forum on Antibiotic Stewardship, one of only three patient representatives invited.
  • Ran online campaigns in support of the Preservation of Antibiotics for Medical Treatment Act and the President’s 2016 Budget Proposal which included significant new investments for the surveillance and tracking of CDI and other antibiotic-resistant infections.
  • In December 2015, PLF was invited to join the National Quality Forum’s Antibiotic Stewardship Task Force. This Task Force is designing a “playbook” to help hospitals implement new requirements for Medicare and Medicaid participation. PLF’s focus is helping identify ways for hospitals to engage patients and caregivers in their antibiotic stewardship programs.

Increased Our Capacity & Built Partnerships: To advance our mission and programmatic work, we have  accomplished the following operational, fundraising, and capacity-building work over the past twelve months:

  • Our Executive Director, Christian Lillis, became full-time.
  • PLF held its 5th Anniversary FIGHT C. DIFF Gala in October 2015, raising more than $60,000.
  • PLF has started the process of becoming a stand-alone 501(c)3 nonprofit, including identifying the right leadership structure. PLF has also engaged a consultant to help build a new Board of Directors.

2014

  • Finalized & embarked on actions outlined in our strategic plan: “Educating Nationally, Advocating Locally.” This plan encompasses a diverse set of goals that we will accomplish over the next three years and features a more refined mission and vision.
    • New vision: A world where C. diff is rare, treatable, and survivable.
    • New mission: Building a nationwide C. diff awareness movement by educating the public, empowering advocates and shaping policy.
  • Educated national audiences and empowered advocates: Presented PLF’s first Innovators Award to Drs. Bruce Hirsch and Gerard Honig; and first Advocacy Award to the Dexter family for their work in memory of their wife and mother, Judy.

2013

  • PLF co-sponsored Selling Sickness: People Before Profits. The conference saw 200 activists, academics, journalists, and healthcare workers come together to take on the epidemic of over-diagnosis and overtreatment in the U.S.
  • Increased C. diff Visibility: The foundation continued to play a prominent role in raising CDI awareness in the media, the press, the Internet and social media:

2012

  • Developed educational resources:
  • Increased C. diff Visibility in the Media:

2011

  • Developed educational materials: Launched the most comprehensive, patient-focused website about C. diff used by survivors, sufferers, patients and health providers in the US and in 30 foreign countries.
  • Increased C. diff awareness in the media:
    • Appeared on “A Better Way”, on Manhattan Community Television and “Joy In Our Town” on Trinity Broadcasting Network.
    • Published first editorial, “An epidemic that states have to stop”
  • Christian and Liam Lillis wrote the Foreword to Clostridium difficile: A Patient’s Guide by Christopher O’Neal, PhD and Raf Rizk, MD, the first patient-focused book to tackle C. diff, written by a survivor and his doctor.

2010