Meet our 2025 class of PFF Ambassadors
About the PFF Ambassador Program The Pulmonary Fibrosis Foundation (PFF) Ambassador program encourages and empowers patients, caregivers, lung transplant recipients, family members, and those who have lost a loved one to serve as spokespeople for the pulmonary fibrosis (PF) and interstitial lung disease (ILD) community on behalf of the Pulmonary Fibrosis Foundation. Our Ambassadors speak at PFF Care Center Network sites, support group meetings, fundraisers, educational events, and many other settings. PFF Ambassadors represent the PFF and share a message of hope and inspiration to those affected by PF and ILD.
2
Diane Herkenham Caregiver to her husband, Jim, who passed away from pulmonary fibrosis in February 2023
“Speak to your medical providers. Speak to your family and friends. Speak so that patients in the future can get an early diagnosis. Speak so that all of us, patients and caregivers, can breathe easier. Together with the PFF, we can make a difference.” Diane’s husband, Jim, suffered from shortness of breath for many years before he was finally diagnosed with pulmonary fibrosis. The news took Diane’s breath away. She had a million questions, but no answers, and wondered how they would handle this new life. She wishes they had discovered the PFF sooner to help them find the information they needed to cope with their new reality. Jim loved life and wanted to live it fully, poor health or not. So, they did. They continued to travel the world on cruises and live meaningful lives. After Jim passed away, Diane dedicated herself to increasing awareness of the disease and helping to raise funds to support research into better treatments and for a cure. Today, she honors Jim’s memory by educating people on PF and sharing her knowledge with patients and caregivers as a PFF Ambassador.
3
Edward (Ed) Malley Diagnosed with pulmonary fibrosis in 2017, received a single-lung transplant in 2022
“I am an eternal optimist. Even when I was diagnosed with pulmonary fibrosis, I knew my work in this life was not finished and that I would do my best to survive.” When Ed developed a dry cough, he knew something wasn’t right. After many tests, his cough persisted, but there was still no answer. When he finally received a diagnosis of PF, it was a shock to read the prognosis online. Ever the optimist, Ed was determined to do whatever he could to stay as healthy as possible. He discovered the PFF while searching for online pulmonary rehabilitation courses during the COVID-19 pandemic. Ed remained stable with the help of pulmonary rehab, medication, and supplemental oxygen until a series of exacerbations made it clear that he needed a lung transplant. Recovery was long and difficult, and follow-up care felt like a full-time job, but today Ed is enjoying post-transplant life by traveling and celebrating important family events. He encourages people living with the disease to keep fighting as a PFF Ambassador.
4
Gary Shuman Diagnosed with idiopathic pulmonary fibrosis (IPF) in 2013
“Advocate for yourself. Try to find the best specialist you can in a medical center that has a focus in pulmonary fibrosis. You will have better access to best practices, new clinical trials, and targeted care.” When Gary and his wife, Beth, moved to Boston, they set out to explore the city on foot. Two-to-five-mile walks were a regular part of their routine. So when Gary couldn’t finish a fundraising walk due to shortness of breath and ended up receiving oxygen in the medical tent, they knew something was very wrong. His doctor observed crackling sounds in Gary’s lungs and advised him to see a pulmonologist. After many tests, he received the diagnosis of IPF and was shocked to read the prognosis online. The whole family was scared of what the future might hold, but more than a decade later, Gary is still going strong. He believes his early diagnosis made a huge difference in his health, along with antifibrotic medication, quality specialized care, and advocating for himself. He’s made changes and adjusted his lifestyle to accommodate his physical needs while still living a full life. Today, he educates people about the disease and advocates for early diagnosis as a PFF Ambassador.
5
James (Jim) Kuhn Diagnosed with sarcoidosis-associated interstitial lung disease in 2015
“You deserve compassionate care, reliable information, and a community that understands. Don’t settle. Advocate for yourself and never give up.” When Jim began to experience shortness of breath, his pulmonologist told him to lose weight and didn’t run a single test. After switching doctors, it still took a long time for Jim to get a diagnosis, leaving him frustrated and scared. After multiple biopsies and countless tests, he finally learned that he had sarcoidosis-associated ILD. At a loss for what to do, Jim felt alone with an elephant sitting on his chest every time breathed. He made the decision to stop being a passive patient and became a proactive partner in his care. He began by building a quality healthcare team and learning everything he could about his disease. He also joined an online support group, where he met people who understood what it’s like to live with a chronic illness. Determined not to let ILD ruin his enjoyment of life, Jim educates people about the disease and raises awareness as a PFF Ambassador.
6
Kelly Andrews Diagnosed with interstitial lung disease with pulmonary fibrosis in 2022
“We all want to find ways to increase our quality of life, no matter who we are or the challenges we face. For me, being proactive and intentionally optimistic is the answer to, “What’s next?” After Kelly’s third stay in the hospital for pneumonia, she and her doctor decided it was time to look deeper into what was causing her illness. A bronchoscopy and lung biopsy revealed the diagnosis of ILD with PF. A respiratory therapy student at the time, Kelly struggled to remember what this diagnosis meant as questions flooded her mind. In the end, there was only one question she had for her doctor: “What’s next?” Determined to form a battle plan to fight the disease, Kelly built a trusted medical team and did everything she could to support her treatment. Her proactive and optimistic attitude, along with prayer and reflection, have given her insight and purpose throughout her health journey. She and her sister Renée, who also has PF, have found many resources and support through the PFF. Today, Kelly raises awareness and educates people about ILD and PF as a PFF Ambassador.
7
Kimberly Branche Diagnosed with interstitial lung disease and polymyositis in 2017
“I may live with pulmonary fibrosis, but I also live with hope and with purpose! I live with faith that none of us has to fight this battle alone. Together with the PFF, we can raise awareness, strengthen advocacy, and move toward a future where pulmonary fibrosis no longer steals our breath.” When Kimberly went to see a pulmonologist about a small nodule on her lung, her world shifted. The diagnosis of interstitial lung disease and polymyositis was a shock. Suddenly, she was being counseled about living with chronic lung disease, oxygen equipment, pulmonary rehabilitation, and support groups. As her symptoms increased, ordinary activities like walking across a room, climbing stairs, even getting dressed began to feel like hiking mountains. However, Kimberly refused to let fear overwhelm her and instead relied on her faith as an anchor in the storm. She decided to become her own advocate by educating herself and taking control of her care, seeking out medical professionals who listened and helped her to create a tailored treatment plan to improve her lung function. Determined not to let the disease silence her, Kimberly uses her story to raise awareness, understanding, and hope for herself and other patients as a PFF Ambassador.
8
Kristin Raack Father, Al, was diagnosed with idiopathic pulmonary fibrosis in 2015 and passed away in 2024
“My parents grew their support team to include the PFF. Through the organization, they uncovered a community of friends, heaps of resources, and a renewed sense of purpose.”
When Kristin’s father, Al, began battling multiple bouts of pneumonia, no one could figure out what was causing his difficulty breathing and fatigue. After a slew of tests, he remained a medical mystery. When he was finally diagnosed with IPF, even Kristin’s mother, Joyce, a nurse for more than 40 years, hadn’t heard of the disease. That didn’t deter her from learning everything she could about IPF and helping him find support groups and a pulmonary rehab program, which became a lifeline. An amazing team, Kristin’s parents advocated for the right care and found ways to work around her father’s limitations so that he could enjoy life. The whole family rallied around Al and refused to let IPF steal their joy. Today, Kristin honors her father’s legacy by fostering greater awareness of the disease as a PFF Ambassador to help efforts to encourage earlier diagnosis, develop better treatments, and find a cure.
9
Mark Cackler Diagnosed with idiopathic pulmonary fibrosis in 2022
“In addition to all the other bad aspects of living with IPF, people don’t always realize how annoying and time consuming it is. Being sick with IPF is basically a part-time, if not full-time, job.”
When Mark retired, he made many plans for how to spend his free time. However, none of them included devoting many hours a week to dealing with IPF. He was diagnosed after he noticed walking uphill became increasingly difficult and an old friend encouraged him to get it checked out. The time spent going to medical appointments, sorting out insurance, and starting a new exercise program felt like having a parttime job. Thanks to medication, exercise, and pulmonary rehabilitation, Mark’s disease progression was slow for the first three years and he continued to travel and do the things he enjoys. Later, when the disease began to progress, he decided to pursue a lung transplant and is currently waiting for “the call.” Grateful to the PFF for all they do to help patients, Mark educates people about the disease and raises awareness as a PFF Ambassador.
10
Richard (Rick) Hansen Diagnosed with idiopathic pulmonary fibrosis in 2021
“While each of our journeys with this disease is unique, we share a common goal of finding better treatments and, one day, a cure.”
Although a routine physical in 2019 indicated fibrosis in Rick’s lungs, it wasn’t until 2021 that his doctor recommended he visit a pulmonologist to investigate a persistent cough. The pulmonologist noted fibrosis consistent with IPF, but no one communicated to Rick the meaning of his diagnosis. It wasn’t until a year after his diagnosis that Rick fully understood the seriousness and progressive nature of the disease. Motivated to take a proactive approach to managing his health, Rick researched IPF, explored available treatment options, and participated in clinical trials. He also discovered the importance of community and connection through organizations such as the PFF, where patients, physicians, researchers, and others come together to learn and share their experiences. Today, Rick is committed to educating others about IPF and raising awareness to help people understand the disease as a PFF Ambassador.
11
Shalice Williams Diagnosed with dermatomyositis with MDA5 and interstitial lung disease in 2023
“The PFF is a great source of support. I encourage you to reach out to them to learn more about the wide range of services they offer to patients and caregivers. It’s a place where you can find people who understand what you’re going through.”
A routine annual exam took a turn when Shalice’s bloodwork indicated something was wrong. Further analysis suggested that an autoimmune condition could be the cause. She began experiencing strange symptoms, including being unable to lift her arms over her head, grip objects, or walk without becoming breathless. Determined to find answers, Shalice pursued further testing and eventually received the diagnosis of dermatomyositis with MDA5 and ILD. Backed by a strong medical team, Shalice’s lung function has improved. She believes her faith and positive attitude have also helped strengthen her health. Surrounded by a caring village of friends and family, Shalice is determined to do whatever it takes to fight the disease. Today, she shares her experience and educates people on how to support patients as a PFF Ambassador.
12
Tim Cox Diagnosed with idiopathic pulmonary fibrosis in 2014, received a lung transplant in 2016
“Early on in my journey, I chose to reach out to the PFF and discovered an amazing staff who empathized, listened, and gave me options to consider. Through all the information that is available, I found answers to my questions, and more importantly, connection to others.”
When mowing the lawn began to feel like an impossible task, Tim blamed his shortness of breath on the North Carolina humidity and lack of exercise. His doctor didn’t agree. After a range of tests, the diagnosis of IPF left Tim with hundreds of questions bombarding his brain and fear flooding his heart. Determined to fight the disease, he focused on taking the next step while building a community of support to give him strength on his journey to receive a lung transplant. It was a long and complicated recovery, but more than a decade after his diagnosis, Tim is thriving. A pastor dedicated to serving others, Tim is committed to helping patients with IPF and encouraging them every step of the way as a PFF Ambassador.
13
Toma Watt Caregiver to husband, Bill, who was diagnosed with idiopathic pulmonary fibrosis in January 2024
“Pulmonary fibrosis can take your breath, but it doesn’t have to take your agency. Participation transforms worry into action and action into impact. That’s why I am a PFF Ambassador.” Toma and Bill were happily enjoying retirement until the night Bill woke up shaking violently and experiencing numbness and shortness of breath. The cold he was battling turned out to be COVID-19, and after many tests and specialist visits, he was diagnosed with IPF. Trying to make sense of the diagnosis felt like fog swallowing a coastline—disorienting and scary. Toma and Bill decided to learn everything they could about the disease and find expert care. When they discovered the PFF, it was like a lighthouse cutting through the fog. They were able to share their knowledge of IPF with Bill’s siblings, one of whom has also been diagnosed with the disease. Today, Toma educates people about IPF and raises awareness as a PFF Ambassador.
14
Thank you to all of our PFF Ambassadors! Want to book an Ambassador to speak at your support group, educational event, fundraiser or conference?
Book a PFF Ambassador
15
223 W. Jackson Blvd. Suite 350, Chicago, IL 60606 phone: 844.TalkPFF | 844.825.5733 email: help@pulmonaryfibrosis.org