Temple Lung Center has worked together with the Wescoe Foundation for Pulmonary Fibrosis for many years and is happy to see the expansion of the PA IPF Support Network. Through our involvement with the support network’s PF podcast, educational seminars, lung transplant series, and IPF Carebook, we are finding that this is an exceptional resource for Pennsylvanians living with pulmonary fibrosis. I encourage you to connect with the PA IPF Support Network and all that it has to offer.
The Wescoe Foundation and, specifically, Jen Wescoe have been a wonderful source for education, emotional support, and life changing adjustments since being diagnosed with IPF in April 2017. Through Jen’s untiring efforts, leadership and empathy, Nancy and I have met many other IPF patients who shared their stories and because of Jen, this journey has been made a little easier. We can never thank Jen and the Wescoe Foundation enough for all the selfless work they do for us. Thank you.
I cannot stress how beneficial and important the Wescoe Foundation for Pulmonary Fibrosis and the PA IPF Support Network is to my patients. When a patient is diagnosed with pulmonary fibrosis, it can often be scary, isolating, and difficult to find accurate information. The Wescoe Foundation /PA IPF Support Network provides a community of caring people who can help others going through a similar situation, providing invaluable support and guidance. Additionally, the clear and accurate education available provides an opportunity for the patient to learn the most accurate and timely information about pulmonary fibrosis from a trusted source.
The Wescoe Foundation for Pulmonary Fibrosis is a beacon of hope in an often turbulent and dark storm. The Wescoe Foundation for Pulmonary Fibrosis not only supports pulmonary fibrosis patients, their caregivers, and families…they educate the medical community and public about this terminal illness. The Wescoe Foundation for Pulmonary Fibrosis not only provides support groups for patients that have PF…they recognize and provide support groups for caregivers of patients that have pulmonary fibrosis. The Wescoe Foundation for Pulmonary Fibrosis not only advocates for and supports research about pulmonary fibrosis…they provide opportunities for patients and caregivers to have access to the most recent trends in medical treatment for pulmonary fibrosis patients. The Wescoe Foundation for Pulmonary Fibrosis is our constant supportive connection to traversing the ups and downs of pulmonary fibrosis.
Thank you, Jen, on behalf of the faculty and staff of the Simmons Center, for your leadership and tireless advocacy for patients who suffer from pulmonary fibrosis. We greatly appreciate that you have built the PA IPF Support Network and have engaged pulmonary fibrosis patients, their caregivers, and allied health providers from across the Commonwealth to advance the mission of supporting patients through this devastating illness. You have congregated the leaders from the major academic institutions and have brought education to patients living in the cities, towns, and rural districts in Pennsylvania. You have developed robust fundraising efforts to support the PA IPF Support Quarterly Seminar Series. We stand in awe of your strength and determination. You have turned your family’s tragedy with pulmonary fibrosis into a living monument to the many patients who have succumbed to this terrible disease. Your determination will help us all see a day when pulmonary fibrosis is curable. I consider myself very lucky to work with you.
The Wescoe Foundation always provides an incredible amount of support, education, advocacy, and resources for my patients and their families living with IPF. The immense strain covid and its resultant fibrotic disease process has inflicted on our healthcare systems in the past year has affected many providers’ ability to appropriately treat patients with this disease. The Wescoe Foundation has been able to remedy the shortcomings in our hospital systems and let the pandemic ignite their drive to further advocate for disease awareness, management, and emotional support for so many people. When I refer a patient to the Wescoe Foundation, I know, at the very least, that my patient will be heard.
If you are a patient or caregiver looking for up-to-date information about Pulmonary Fibrosis, the Wescoe Foundation and PA IPF Support Network are the sites you want to visit. Not only will you find up-to-date information about this disease, but you will be able to hear firsthand experiences from people who have gone through exactly what you are going through.
Jen Wescoe has shown the passion and perseverance to continue to bring relevant education and support directly to the people who are most affected by IPF. She and the Wescoe Foundation have been committed to help patients and caregivers understand a very complex disease so they can be better equipped to partner in their care to make choices that are right for them. All of you at the Wescoe Foundation- Thank you for all that you do!
A. A. Milne once wrote: “There is nothing that you and I could not accomplish together, if we gave our minds to it.” And that’s Jen Wescoe, the force behind the Wescoe Foundation – nothing is impossible if we do it together. When Jen invited me to become part of this collaboration over a decade ago, I would never have imagined the many ways it would take off. What began as a joint collaboration for a patient support group through my Pulmonary Medicine Division at Geisinger Medical Center in Danville, PA has now grown into a pulmonary fibrosis podcast, a state wide recognition and awareness for pulmonary fibrosis accommodations every year, lighting landmarks blue throughout Pennsylvania, the submission of multiple proposals to national medical organizations and societies about the need for improving the access and availability of patient and caregiver support groups in the management of pulmonary fibrosis as well as the newest accomplishment, a national podcast with the American Thoracic Society, “Pulmonary-Palliative Care: We Be-LUNG Together.”
I love working with the PA IPF Support Network because pulmonary fibrosis is the sort of tough disease that is best fought with a sustained, community-based effort. The first time I met Jen, she introduced me to the Wescoe Foundation’s IPF patient Carebook. This simple, practical, yet powerful patient-centered tool can be used by all patients, regardless of their location, community, or personal situation.
Consumers today can access a lot of medical information. However, in the case of Idiopathic pulmonary fibrosis, I don’t believe that the population is knowledgeable enough about the disease to suspect they might have it when they receive a more “familiar” diagnosis, such as COPD. That is why we are trying to disseminate information, working with the Wescoe Foundation for Pulmonary Fibrosis to establish a patient support group here at Trinitas.
The Trinitas Lung Disease Support Group offers an avenue to patients with Interstitial lung disease (as well as their families and caregivers) to share experiences and receive information from our staff, and better understand the resources available. The meetings are held the third Friday of the month. Our first Zoom event in August went very well–we had a lot of good questions and spent an hour talking to Jennifer Wescoe, whose father died of interstitial lung disease. She has dedicated her life to raising awareness of IPF among the public and the medical community. Early diagnosis, early referral, early treatment–this makes a world of difference.
This is a worldwide problem. I am so grateful to Jennifer Wescoe and the Wescoe Foundation, the Pulmonary Fibrosis Foundation and others that are trying to raise awareness.
Patient and Care Partner Stories
Kathy’s page is dedicated to all IPF patients and their families coping with this disease. Kathy will be writing about her story to inspire us and motivate all of us to keep working hard to find a cure. It has been a long journey for Kathy and a true honor to have her contribute to Wescoe Foundation for Pulmonary Fibrosis and the IPF community!
Kathy was my piano teacher and ironically, coped with IPF and all of its trails and tribulations. Kathy had a double lung transplant in March 2012 and made it a mission to attend our Wescoe Walk on October 24, 2013. It was moving and incredibly comforting to know that Kathy is doing well and thriving with her new lungs.
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
My journey is a story of two families. My family and an extremely generous family, that continues to remain anonymous to me.
In 2007 at the age of 42, I was diagnosed with an ILD, Interstitial Lung Disease. I had a lung biopsy in the Spring of 2008. I was diagnosed with Idiopathic Pulmonary Fibrosis, IPF. Pulmonary Fibrosis is a disease without a cure and it is terminal. The median life expectancy is 3 – 5 years. Kym, my wife, and I were devastated.
ATS Podcast Highlight
The American Thoracic Society’s Breathe Easy Podcast, “Pulmonary-Palliative Care: We Be-LUNG Together” hosted by and Dr. Patricia Fogelman, DNP, ACHPN, globally highlights Jen Wescoe and the Wescoe Foundation for Pulmonary Fibrosis’s critical engagement in the PF community.