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Two Days and 20 Advocates Building One Movement to Fight C. diff Infections

This past Friday and Saturday, the Peggy Lillis Foundation (PLF) held the first-ever Summit for C. diff Advocates in New York City. Over the course of two days, more than 20 presenters and trainers with a wide range of expertise in medicine, microbiology, federal and state health care policy, media relations, lobbying and grassroots activism, provided vital knowledge and skills to these new volunteer leaders.

Advocates Group Shot
The Summit highlights PLF’s focus on the second plank of strategic plan, Empowering Advocates, and the public launch of our new Advocates Council. The Council comprises more than 30 individuals from across the United States whose lives have been devastated by a C. diff infection (CDI), either directly or through a loved one. Throughout the spring and summer, PLF has been actively recruiting volunteers to join the council as leaders in their communities and, collectively, nationwide. Given that lack of public knowledge, inconsistent clinical practice, limited treatment options and varying degrees of public reporting all contribute to the CDI epidemic, our Advocates are poised to have an enormous impact by raising awareness, engaging health care workers, supporting efforts to expand the treatment pipeline and pushing for great transparency.

The Summit was also a rare opportunity for C. diff advocates to meet in-person and build community with each other and the experts present. Advocates joined us from Florida, Ohio, Rhode Island, Missouri, California, Indiana, and Maryland. The critical knowledge and skills advocates learned included:

  • The state of Clostridium difficile infections as a disease,
  • The current legislative and regulatory framework for C. diff at the federal level,
  • How C. diff is tracked and reported in the states and where advocacy can increase transparency,
  • The way the C. diff epidemic intersects with others issues, including aging, antibiotic overuse and misuse, infection control, and the larger movement to end medical harm,
  • How to tell their stories effectively to raise awareness and inspire action by policymakers, health care workers, and the general public,
  • How advocates can work in their local communities to educate patients, raise money and engage the new generation of health care workers,
  • Effective ways to leverage social media for advocacy and C. diff awareness, and
  • Tips for engaging the media

Advocates and presenters have been unanimous in their praise for the Summit, and in the need to build a nationwide movement to fight C. diff:

  • Catherine Duff, Advocates Council member and founder of The Fecal Transplant Foundation said, “What a fantastic two days with the PLF Advocates Council. Great presentations and panels. Together we will make a difference!”
  • Advocates Council member, Sheryl wrote, “Thank you for including me in the Summit. It was an amazing two days. I was riveted by the presentations and panels. After this weekend, I feel more confident, that we will lick this bug.”
  • Presenter Cynthia Bens of the Alliance for Aging Research said, “I just wanted to thank you for inviting me to speak at the summit on Friday. It meant a lot to be a part of such a meaningful event…  and [to bear] witness to the beginning of an important healthcare movement.”
  • Meghan, who lost her mother to C. diff, wrote, “Amazing experience. My mind is full of information. Very excited to be apart of this.”
  • Ilene Corina, an experienced patient safety advocate and leader of PULSE NY, wrote a great blog post about her experience at the Summit: Preventing C-Diff in Loving Memory
  • Dr. Barbara McGovern of Seres Health wrote us, “I really enjoyed talking with the attendees who promise to be fervent advocates for prevention and treatment of this devastating disease. I enjoyed hearing some of the wonderful stories around your Mom. She was an amazing person by all accounts.”

As PLF’s executive director, I was inspired, excited and humbled by the incredible commitment our new advocates displayed. They have experienced first-hand and through loved ones the devastating impact of this disease. We are also incredibly grateful to all the presenters who not only lent their expertise, but their moral support to this critical aspect of PLF’s work. A full listing of speakers is below.

We are currently editing videos of the Summit sessions, which we’ll share when they’re available. PLF will also be updating our Tools and Resources page for Advocates in the coming weeks. Meanwhile, we invite you to look at pictures from the event: Photos from 2015 C. diff Advocates Summit


Thank You!

2015 Summit Sponsors

Cepheid LogoPew Charitable Trusts LogoSeres Logo Final ColorSynthetic-Biologics-white-300

2015 Summit Travel Partner

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2015 Summit Presenters*

Cynthia Bens
Vice President, Public Policy, Alliance for Aging Research

Ilene Corina
Founder & President, PULSE of New York

Michael Craig
Senior Advisor, Centers for Disease Control

Kimberly Davidow
Sr. Media Relations Specialist, Tonic Life Communications

Rich Dexter
Member, PLF Advocates Council
Recipient, PLF’s 2014 Advocate Award

Catherine Duff
President, Fecal Transplant Foundation
Member, PLF Advocates Council

Lisa Freeman
President, Connecticut Center for Patient Safety

Klaus Gottlieb, MD
Vice President, Clinical and Regulatory Affairs, Synthetic Biologics

Helen Haskell
Founder, Mothers Against Medical Errors

Anna Heleniak
Senior Account Executive, Tonic Life Communications

Gerard Honig, PhD
CEO, Symbiotic Health
Member, PLF National Advisory Council

Amanda Jezek
Vice President, Public Policy & Government Relations, Infectious Disease Society of America

Hans Johnson
President, Progressive Victory

Christian John Lillis
Executive Director, Peggy Lillis Foundation

Liam Lillis
Co-founder, Peggy Lillis Foundation

Nicole Mahoney, PhD
Director of Global Regulatory Policy, Merck & Co., Inc.

Barbara McGovern, MD
Vice President of Medical Affairs, Seres Therapeutics

Tara Montgomery
Senior Director, Health Impacts, Consumer Reports

Carole Moss
Co-founder, Nile’s Project

Lisa Neudecker
Moderator, C. diff Support Group
Member, PLF National Advisory Counci

Daniela Nunez
Grassroots Organizer, Consumers Union

Katherine Portnoy
Associate, The Pew Charitable Trusts

Julie Reagan, PhD, JD, MPH
Assistant Professor, Health Policy and Management, Georgia Southern University
Member, PLF National Advisory Council

Phenelle Segal, RN CIC
Founder, Infection Control Consulting Services
Member, PLF National Advisory Council

Anne Timmins
Project Manager, HealthInsight New Mexico

Susan Watkins
Senior Communications Director, Sanofi Pasteur

*Affiliations are for identification purposes only.

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