By: Christian John Lillis
Peggy Lillis Foundation’s annual Summit has often created the opportunity for C. diff advocates to connect with clinicians, researchers, and industry representatives. We feared that taking it virtual would hinder those connections. Turns out we needn’t have worried. Among the connections made at this year’s Summit was one between Idaho-based advocate Carol Raye and Michelle Avery, senior director of patient engagement for Summit Therapeutics. Following the Summit, Michelle invited Carol to share her story with the entire Summit team through a virtual conference call.
Carol wrote of the experience:
In the midst of a pandemic, I am thriving. I’ve always wanted to attend the Peggy Lillis Foundation national C, diff summit and this year, due to the
coronavirus, it went to a virtual format and I was able to fulfill that dream. That’s when the world opened up for me.
During the first networking session, I met Michelle Avery from Summit Therapeutics and told her the story of my experience with C. diff and the after effects that I live with every day. Eight years post CDI, I am still trying to rebuild my microbiome. I have and will try anything to feel truly healthy again. The idea that there will be an antibiotic that will target C Diff and not destroy the rest of a person’s gut bacteria is a dream to me and a blessing to those who will take it in the future.
Michelle and I exchanged information at that introduction and she later asked me to tell my story to her team. The doors of my world opened at that moment. I never would have known that the people finding a solution to this disease would not have contact with the patients who are suffering. Hearing my story inspired them and I have subsequently had multiple conversations with other extended teams and individuals associated with them. These interactions have definitely inspired me to do more advocacy work and on a much larger scale than I have in the past.
My goals with C. diff advocacy had always been to mentor people who are suffering as I suffered and to educate my local community on C. diff awareness. Now my goals have gone global and I want to reach out to the world and help people understand how to avoid contracting such a devastating illness. I am grateful to the Peggy Lillis Foundation for facilitating this connection. Hopefully, this virtual format can be repeated for future summits so that others and I may benefit from the knowledge that was shared. Thank you so much for the inspiration!
Following the virtual presentation Michelle said, “Those who have experienced CDI first-hand are the true disease experts, and we learn so much by hearing about their different CDI journeys. The unfortunate experiences that so many have had with CDI are what drive our company to develop potential new solutions. We are thankful to Carol for sharing her story with us and providing insight into where positive changes could make a big difference for those with CDI.”
Carol is also exploring doing education about antibiotic overuse with dentists in Idaho. We’re proud to have her as one of our Advocates and Summit Therapeutics as one of our partners in the fight against C. diff.