How can you volunteer with the Pulmonary Fibrosis Foundation? I am glad you asked. Let me count the ways.

The PFF relies on volunteers for many of their programs throughout the year. Being a volunteer serves to augment the staff in many critical areas where your personal experience, whether as a patient with pulmonary fibrosis, a caregiver or family member to someone with pulmonary fibrosis, is invaluable. Let’s look at five opportunities for you to get involved as a volunteer.

1 – The voice of the patient and caregiver community is powerful. Telling your story in your own words is essential to the advocacy work of the Foundation. Advocacy does not occur just on PFF Hill Day each year. It is ongoing throughout the year. Contacting your elected leaders and their staff by sharing your experience and speaking about policies that directly affect the PF community, like funding research for pulmonary fibrosis and supplemental oxygen reform, is so important.  

2 – Apply to become a PFF Ambassador for the Foundation. With the training provided, you may find yourself speaking to support groups, medical students, drug developers, or at PFF events such as walks. Spreading awareness of pulmonary fibrosis and a message of hope for living with PF, is the goal of the program.

3 – Join the PFF Community Registry! Your journey and your experience can be documented to assist researchers in developing a better understanding of pulmonary fibrosis. This is not just for patients. It is a tool that also collects observational data from caregivers, family members, and lung transplant recipients.

4 – Do you have a great idea for a fundraiser? Fundraisers are only limited by your imagination. Would you consider hosting a comedy night? Form and lead a team for one of the PFF Walks? Host a sip and paint event? Not all fundraising events have to be large events. Every fundraiser helps raise money to further the work of the Foundation.

5 – If none of this sounds right for you, I have one suggestion that never fails. Reach out to Jamie Hillner, Director of Volunteeer Programs and Advocacy at the PFF. She can be reached by email at jhillner@pulmonaryfibrosis.org. I have always found the direct approach is best. You only have to ask, “how can I help?”.

I have been a volunteer with the PFF for a number of years. I have experience with every one of the suggestions I have provided. I am glad to talk with you about my experience as a PFF volunteer. When I started as a volunteer, I had been diagnosed with idiopathic pulmonary fibrosis and met Amy Wardzala, Vice President of Development at the PFF, at a support group meeting. It was about eight years ago. I asked her how I could help. I am now more than three years post-transplant, and I will continue to work with the PFF. I do not want future generations to be faced with a chronic, progressive disease for which there is no cure. I want them to only know pulmonary fibrosis as a disease that was cured in my lifetime.

How can you help?

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About the Pulmonary Fibrosis Foundation

At the Pulmonary Fibrosis Foundation. we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year. As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.