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