Peggy Lillis Foundation

Peggy Lillis Foundation

Formation	2010 (2010)
Type	Nonprofit
Executive Director	Christian John Lillis
Co-founder	Liam Lillis
Website	peggyfoundation.org

Peggy Lillis Foundation (founded in 2010) operates as a non-profit organization. PLF is the leading national organization dedicated to combating Clostridioides difficile infections (CDI) through educating the public, empowering advocates, and shaping policy.

History

Peggy Lillis Foundation was founded in response to the April 2010 death of Brooklyn Kindergarten teacher, Margaret "Peggy" Lillis. Peggy died on April 21, 2010, at 7:20 pm from sepsis resulting from a C. diff infection. C. diff is a Gram-positive, spore-forming bacterium that can colonize the human colon. It’s found in the environment in soil, air, water, human and animal feces. A small percentage of adults have C. diff in their guts, where it exists with other bacteria, viruses, and a host of microorganisms that we refer to collectively as the microbiome. When the microbiome is disrupted, most often by the use of antibiotics, the C. diff bacteria can reproduce rapidly. In reproducing, it gives off toxins that harm the lining of our colon. This is now a C. diff infection (or CDI). The symptoms of CDI include perfuse, watery diarrhea, fever, nausea, abdominal cramping, dehydration, and loss of appetite. Her sons Christian and Liam Lillis started PLF the summer after their mother died. According to Christain, he said "To be honest, neither me nor my brother can remember the exact day or conversation when we made the decision. I suspect that’s the result of the grief and shock we were experiencing in the wake of her death. But by that summer of 2010, we had a date for our first fundraiser. “Celebrating Peggy’s Life” was held on what should have been her 57th Birthday. So, we usually say we started in June 2010."

Their vision is an end to the death and suffering that is caused by C. difficile and other healthcare-associated infections. In pursuit of that vision, they are growing a national C. diff awareness movement.

About Peggy

Margaret Mary “Peggy” Lillis (nee Daly) was born into a large, Irish-Catholic, working-class family in Brooklyn, New York. She married in 1973 and had two sons, Christian and Liam. She separated from her husband in 1979, beginning her life as a single mother. Despite these challenges, in 1987 she earned an Associates's Degree in Education and began working for the New York City Board of Education as a paraprofessional. She also waited tables on weekends to supplement her family’s income. Over the next 15 years, she successfully raised her two sons, while continuing to work as a para and a waitress, and earning a Bachelors's Degree in Psychology from Brooklyn College. A vocal advocate for students in the public education system, Peggy eventually became a Kindergarten teacher and taught for the last six years of her life in Flatbush, while working toward a Master’s Degree at Touro College. In 2009, she finally became a homeowner, purchasing a house with her son in Marine Park, Brooklyn. At the time of her death, she was teaching at PS 198, caring for her elderly mother, and planning to spend her retirement between her home in Brooklyn and her long-time partner’s house in Maui.

Team Members

Christian John Lillis, Executive Director

Peggy’s elder son. Christian has 20 years experience in fundraising, advocacy and nonprofit management, including the National LGBTQ Task Force, and NYU Langone Medical Center. As head of PLF, Christian has led five national convenings of C. diff Advocates, built a 50-person volunteer Advocates Council, coordinated the first-ever C. diff Lobby Day on Capitol Hill, and produced the first-ever public service announcement on C. diff infections. In 2013, the Centers for Disease Control and Prevention recognized PLF’s work with its Excellence in Partnership award for domestic advocates and organizations. Christian has presented to state hospital associations, quality improvement organizations, healthcare systems and industry leaders, including Mount Sinai Health, National Quality Forum, and the Presidential Advisory Council on Combating Antibiotic Resistant Bacteria. He has also testified at Congressional briefings. Christian’s writing has appeared in the Baltimore Sun, Cleveland Plain Dealer, and the CDC’s Safer Healthcare Blog. He has also co-authored articles for journals including Advances in Therapy and American Journal of Gastroenterology. PLF’s work has been featured in Consumer Reports, USA Today, and Reuters. Peggy’s story was also featured Dr. Martin Blaser’s 2014 book, Missing Microbes: How the Overuse of Antibiotics Is Fueling Our Modern Plagues. Christian has more than two decades of experience as a fundraiser and strategist for nonprofits, including the National LGBTQ Task Force, and NYU Langone Medical Center. Christian holds a B.A. in Political Theory from Brooklyn College-City University of New York. A native Brooklynite, he lives in its Kensington neighborhood with his husband Chris and their beagle, Maggie Anne.

Liam Lillis, Co-founder

Peggy’s younger son. Liam is a plumber at Kings County Hospital in Brooklyn and a member of Plumbers Local 1. He previously worked for Ideal Plumbing and AC Klem. Liam lives in Marine Park, Brooklyn with his wife, Melissa, their son Greyson as well as their dog, McGee, and their cat, Maizey.

Rest of the Board

Victoria Amari

Victoria is Director of Corporate Affairs Communications, Oncology at Celgene. She has more than 15 years of healthcare publicity and marketing experience and has developed relationships with top medical and third party organizations, such as the Centers for Disease Control and Prevention, the American Medical Association, National Meningitis Association, National Foundation for Infectious Diseases, the American Academy of Pediatrics, and AARP. Victoria holds a Bachelor of Science in mass communication from Boston University.

Helen Beigel, RN

Peggy’s sister. Helen has been a registered nurse for 25 years. She retired as assistant director of nursing for Northwell Health. Helen holds a BS in Nursing from Molloy College.

Rich Dexter

Rich joined the Peggy Lillis Advocates Council in 2015, where he contributes to advocacy in our nation’s capital and with local fundraising. Rich and his family lost their mother Judy to C. diff in the Spring of 2013. Since then, Dexter and their friends have held an annual picnic honoring their mother that has raised over $90,000 to date for PLF. In 2014, the Dexter Family was recognized with PLF’s first-ever Advocates Award. Rich has his own contracting business and lives in Maryland with his wife, Karen, two boys Jake and Cam, and dogs Cinder and Brewster.

Christina Fuhrman, Secretary

Christina is a stay-at-home mom who lives in Columbia, MO with her husband Dane, son Oren (2), and daughter Pearl (4). She and Pearl are both C. diff survivors. Christina offers local support to those battling C. diff and created a website, www.mygijourney.org, for information on C. diff and FMT treatment. Pearl’s C. diff story was featured in Parents magazine in February 2018. In addition to her work with PLF, she is a member of Pew Charitable Trust’ Stand Up to Superbugs program.

Accomplishments

Educated the Public

• PLF partnered with the Antibiotic Resistance Action Center, Milken Institute School of Public Health, Consumer Reports, Small-r Films, and Delmarva Foundation to co-host a Washington, DC screening of Resistance, a documentary about the history and future of antibiotic resistance.
• The executive director presented a webinar about the patient experience of C. diff for Missouri’s Mercy Health clinical leadership.
• The executive director presented on webinars for Hospital Corporation of America, one of the largest healthcare systems in the world with 168 hospitals and 116 freestanding surgery centers in the United States and the United Kingdom.
• The executive director presented on a webinar for Premier, Inc. a healthcare improvement company uniting 3,750 U.S. hospitals and 130,000 other providers.
• As part of the 2016 Get Smart About Antibiotic Week, PLF partnered with the Centers for Disease Control and Prevention (CDC) to create a video about our namesake, Peggy Lillis.

Empowered Advocates

• One notable Advocate, Meghan Mimnaugh, gave her first-ever Partnership for Patients presentation during a Centers for Medicare and Medicaid Services webinar.
• Advocate Meghan Mimnaugh also joined the Board of Directors of the USA Patient Network.
• PLF increased the Advocates Council's presence and built in more opportunities to engage with them on our website, including adding a “Meet Our Advocates” webpage that connects site visitors to Advocates’ stories, videos, blog posts, and contact information.
• Three advocates wrote entries for our blog sharing how their battles with C. diff inspired their advocacy or changed their perspective.
• The Dexter Family held its 3rd Judy Dexter Memorial Picnic and Cornhole Tournament in June, raising more than $11,200.

Shaped Policy

• PLF played a prominent role in the development and launch of the National Quality Forum’s (NQF) Antibiotic Stewardship Playbook, a tool that will help hospitals implement new requirements for Medicare and Medicaid participation in their antibiotic stewardship program. PLF’s contributions included ensuring the playbook centered patients and families, speaking on a panel about the playbook at NQF’s annual conference, and speaking during the playbook launch webinar in May 2016. In July 2016, NQF featured an interview with our executive director on its blog.
• The executive director attended a Summit at the Centers for Disease Control and Prevention with the agency’s leadership and 20 fellow patient advocates. The meeting resulted in several new collaborative initiatives between advocates and the CDC including an increase focus on sepsis and plans to feature Peggy in the agency’s Get Smart About Antibiotics Week.
• PLF represented C. diff patients at the June 2016 public meeting of the President’s Advisory Council on Combating Antibiotic-Resistant Bacteria.
• PLF assembled teams of Advocates in both New York and Ohio and held kickoff calls with both groups to share our timeline and initial strategy to drive state-level policy change.
• The executive director joined a technical expert panel for the Agency for Healthcare Research and Quality to develop educational programs to implement the antibiotic stewardship requirement promulgated by the Centers for Medicare and Medicaid.
• The executive director also joined the American Institutes for Research’s Person and Family Engagement Advisory Council. The council is designed to guide and center our work in the voices and perspectives of patients and families.
• PLF received its first foundation grant: $2,500 from the Laura Vogler Foundation.
• PLF exceeded our goal of having 500 C. diff survivors and family members engaged with us by December 2016.

External links

• Official website
• Peggy Lillis Foundation on Facebook
• Peggy Lillis Foundation on Instagram
• Peggy Lillis Foundation's channel on YouTube
• Peggy Lillis Foundation on Twitter
• Peggy Lillis Foundation on LinkedIn

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