This year’s PFF Summit is a great opportunity to connect

For this columnist, the annual summit is a chance to learn, be inspired, and reconnect

Samuel Kirton avatar

by Samuel Kirton |

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When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I began to tackle the steep learning curve almost immediately. I may never reach the summit, but that doesn’t mean I’ve given up. There is always something to learn, and I acquire new knowledge on a regular basis.

In November, I will be attending the Pulmonary Fibrosis Foundation (PFF) Summit in Orlando, Florida. I attended my first in-person summit in 2019, and it was inspiring. I was surrounded by people like me — people who knew this disease. They included new patients, transplant recipients, caregivers, friends, family, medical professionals, and members of the PFF Care Center Network. I was among my people!

My first PFF Summit experience

The 2019 summit was held in San Antonio, Texas. When my wife, Susan, and I arrived at the hotel, the conference hadn’t yet started. After checking in and enjoying lunch at the hotel, we set off in search of the registration desk for the event. As we descended the escalator to the conference center, there was a distinct buzz. Old friends, new acquaintances, and PFF staff energized the space as they began to gather. That energy continued for the duration of the summit.

The agenda offered something for every member of the pulmonary fibrosis community. In 2019, I hadn’t yet received my bilateral lung transplant. Susan and I attended general sessions and the keynote speaker session together. Then, Susan focused on sessions intended for caregivers while I sought out sessions on patient education.

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One of the sessions Susan attended had a strong emotional impact. It was a two-part workshop on grief writing. All of us in the PF community experience grief at some point on this journey.

One session I attended focused on emergency preparation and specifically addressed the dangers of wildfires for PF patients. This came in handy when the mid-Atlantic was cloaked in Canadian wildfire smoke earlier this summer.

Susan and I met so many wonderful people at the 2019 PFF Summit. Sadly, some of them have passed, but without the summit, they would never have become a part of our lives. Others remain our friends today.

The 2023 summit

Normally, the PFF Summit takes place every other year. Due to COVID-19, the 2021 event was conducted virtually. This year, it returns to being in-person. I am excited, and I don’t say that lightly. The agenda looks great. The venue looks amazing. Did I mention it will be an in-person event?

I will finally have the chance to meet people I’ve known virtually for years. This was also true in 2019, but on a smaller scale. PFF Ambassadors I’ve worked with virtually since joining the Ambassador program in 2020, community members I’ve met in virtual support groups, and readers of Pulmonary Fibrosis News will all be in attendance this November.

Will you be there?

Look at the agenda and highlight the sessions you find interesting. Review the list of speakers. This will be the first summit for Franck Rahaghi, the PFF’s new president, CEO, and chief medical officer, and this is a great opportunity for us to meet him. Look for ways to get involved and become a better advocate for the PF community. If you’ve never attended a PF poster session, prepare to wander through the seemingly endless aisles of posters displaying important PF-related research. You can even ask the principal researchers questions.

I wanted to share this with you now to give you time to plan to attend. Meet the people in your PF community. You will discover that our common bond is what makes us so special. You will make friends for life; I know I did. Look for me. I’d love to meet you.

This year, I will be attending as a lung transplant recipient. Attending the PFF Summit is another way I can make every breath count.

Let me know in the comments if you will be attending this year’s summit.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Susan McCue avatar

Susan McCue

Hi Sam. I’ll be at PFF 2023. I’m a PF patient with Familial PF Secondary to Short Telomeres and DNA TERT Mutation. I’m Looking forward to all of the presentations, especially those involved with PF and genetics. Hope to meet you there.

Samuel Kirton avatar

Samuel Kirton

Hi Susan,

Thanks for reading my column and for your note. I am glad you will be attending. The education sessions are well done and you will meet other people on a journey similar to yours. See you there.

Sam ...

William Morris avatar

William Morris

Diagnosed with pulmonary fibrosis in 2022 retro to 2019. I awoke one morning in May 2022 unable to breathe enough to get ample oxygen in my lungs. I was rushed to the hospital where they diagnosed pulmonary Fibrosis. I knew my breathing was shallow but thought it was due to being out of shape. I am 88 years old and in pretty good shape. I am not on oxygen but have inhalers in case I need them. I exercise by walking or use the Gym, usually when the weather is good I cut lawns. My pulmonologists says what ever you’re doing continue to do it. I lost my father, and my brother to this disease. My father was 78 and my brother 74. My sister lost her daughter to it also she was 55. I have Covid lungs which I got in 2019 along with the fibrosis. I have read a lot about PF and Hope a cure can be found.

Samuel Kirton avatar

Samuel Kirton

Hi William,

Thanks for reading my column and for sharing your story. I am sorry to learn that PF has impacted your family in the way it has. Identifying a cause and a cure are so important to this community. There are many great minds working on unraveling the mystery that is PF. Come back and let me know how you are doing.

Sam ...

Hervin Guidry avatar

Hervin Guidry

Thanks for the information on the PFF Summit. Sounds like an incredible opportunity.
I was diagnosed with IPF in 2019. My wife and I will be making arrangements to attend. We live in New Orleans, but spend most of the summer and part of the fall at our vacation home in the Blue Ridge mountains of North Carolina, where we are now. We have decided to make a bit of a detour through Orlando on our drive back to New Orleans.

Samuel Kirton avatar

Samuel Kirton

Hi Hervin,
Thanks for reading my column and for your comment. I am glad you made the decision to check out the PFF Summit. I will be attending. Look for me and introduce yourself.

Sam ...


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