Peggy Lillis Foundation:
- April 21, 2020 marked the tenth anniversary of losing Peggy to an overwhelming C. diff infection.
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.
- 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.
- 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.
Awareness and Education:
- Peggy’s story was featured in CNN’s story about the CDC’s report “Antibiotic Resistant Threats in the United States.”
- Advocate Maryann Webb was featured on CBS Evening News with Nora O’Donnell’s segment on the CDC report.
- The Dexter Family held their Sixth Annual Judy Dexter Memorial Picnic & Cornhole Tournament, raising more than $10,000 to combat C. diff.
- The Ninth Annual FIGHT C. DIFF Gala in Brooklyn, NY, raised more than $100,000, making it our most successful fundraiser ever.
- PLF hosted its Fourth Annual C. diff Advocacy Summit in Washington. The event was live streamed, bringing together Advocates, C. diff researchers, industry leaders and healthcare workers, and virtual participants to fight C. diff.
- 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.
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.
- 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.
- Executive Director Christian John Lillis and new Advocate Christina Fuhrman flew joined Pew Charitable Trusts Supermoms Against Superbugs Lobby Days.
- Partnering with the Leapfrog Group and other health organizations and hundreds of signatories, we influenced the Centers for Medicare and Medicaid (CMS) to continue public reporting of dangerous infections.
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.
- 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.
- Executive Director, Christian John Lillis spoke at a public meeting of the President’s Advisory Council on Combating Antibiotic-Resistant Bacteria.
- PLF made a remarkable impact with Ohio stakeholders, clinicians, and legislators, leading C. diff roundtable discussions, testimonials, and supporting legislation on reporting C. diff infections.
Educated National Audiences:
- Our Executive Director published a letter to the editor in the New York Post in response to Betsy McCaughey’s editorial about the Centers for Disease Control and Prevention.
- Co-founders Christian John Lillis and Liam Lillis presented at Merck’s Patient Forum, which was webcasted to the company’s 70,000 employees worldwide.
- PLF partnered with the Centers for Disease Control and Prevention (CDC) to create a video about Peggy Lillis.
- Advocate, Meghan Mimnaugh, presented a Partnership for Patients presentation during a Centers for Medicare and Medicaid webinar; She also joined the Board of Directors of the USA Patient Network.
- PLF added “Meet Our Advocates” to our website connecting visitors to Advocates’ stories, videos, blog posts, and contact information.
- PLF played a prominent role in the development and launch of the National Quality Forum’s (NQF) Antibiotic Stewardship Playbook; and featured an interview with our executive director on its blog.
- Our executive director attended a Summit at the Centers for Disease Control with the agency’s leadership and 20 fellow patient advocates.
- Our executive director joined a technical expert panel for the Agency for Healthcare Research and Quality and also the American Institutes for Research’s Person and Family Engagement Advisory Council.
Increased Our Capacity & Built Partnerships:
- PLF incorporated as an independent 501c3.
Educated National Audiences:
- In partnership with Sanofi Pasteur, produced a video series highlighting patient perspectives on C. diff infections (CDIs).
- PLF developed a patient-focused C. diff brochure in Spanish and English, a collaboration with Merck.
- PLF participated in the Center for Disease Control’s Get Smart About Antibiotics Week, reaching 140,000 Americans.
- 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.
- 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.
- Increased C. diff Awareness in the media: featured in several prominent publications, including:
- Missing Microbes: How the Overuse of Antibiotics is Fueling our Modern Plagues, by Dr. Martin Blaser
- “Medicine’s Dirty Secret” in Mosaic Science
- The CDC’s Safe Healthcare Blog featured an article by PLF’s executive director, which discussed the Journal of Pediatrics report on C. diff infections in children.
- Shaped Policy: Another key focus in 2014 was raising awareness about antibiotic overuse as a key driver of C. diff.
- Presented Congresswoman Rosa DeLauro with our Lifetime Achievement Award
- Our executive director presented at a summit focused on engaging senior advocacy groups in work on antibiotic-resistant bacterial infections hosted by the Alliance for Aging Research
- Former CDC Director Thomas Frieden invited PLF to attend his speech on antibiotic-resistant bacteria at the National Press Club. Dr. Frieden even shared Peggy’s story (at 16:30 in video) to illustrate the harm antibiotic-resistant bacteria causes.
- Our executive director attended the Gulf Coast C. diff Collaborative in June and gave a presentation on how doctors and patients can work together to combat C. diff.
- 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:
- Published a letter to the editor in the New York Times noting that more than 28,000 people die from CDIs every year (now more than 29,000) according to the Department of Health and Human Services, double the 14,000 number they had recently cited.
- Our executive director was quoted in the Associated Press article, “Hospitals See Surge of Superbug-Fighting Products” and in a series of articles about a local hospital’s failure to report C. diff outbreaks in Stockton, California.
- Published four editorials including “The revulsion over feces: Get over it” on the KevinMD.com.
- Our executive director had his first radio interview on Speak Up & Stay Alive.
- Congresswoman Louise Slaughter, sponsor of the Preserving Antibiotics for Medical Treatment Act (PAMTA) and coauthor of the Affordable Care Act, received our Lifetime Achievement Award and partnered in efforts to curb the overuse of antibiotics.
- Developed educational resources:
- The foundation developed and distributed the first-ever public service announcement for CDI that educated more than 50,000 people by the end of 2012.
- Increased C. diff Visibility in the Media:
- Peggy’s story was featured in the special investigation by USA Today in August 2012, “Far more could be done to stop the deadly bacteria C. diff”. Reaching 1.83 million readers, marked a breakthrough in coverage of the CDI epidemic. PLF worked closely with reporters to gather stories on 18 Americans who have succumbed to C. diff, illustrating the human costs behind the statistics.
- We also had two Two op-eds published by our s Executive Director ran in 2012: “How the Affordable Care Act combats preventable hospital infections “, and “Health-Care Investment a Key to Creating Jobs, Saving Lives”.
- Beth Israel Brooklyn began using PLF’s “Fight C. diff” video to educate its physicians, nurses, and staff.
- Participated in a daylong summit at the Centers for Disease Control and Prevention regarding government standards for reporting and enforcement and public involvement in advocacy and prevention efforts.
- 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.
- Produced the first-ever C. diff public service announcement.
- 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.
- PLF is founded as The Peggy Lillis Memorial Foundation.
- Hosted our first annual gala, a celebration of the life of Peggy Lillis.
- Peggy’s story and PLF were featured in The Brooklyn Daily Eagle, the borough’s oldest daily newspaper.