RARE Daily

Rare Leader: Jennifer Wescoe, Executive Director, Wescoe Foundation for Pulmonary Fibrosis

August 1, 2019

The Basics
Name: Jennifer Wescoe

Title: Founder and Executive Director

Organization: Wescoe Foundation for Pulmonary Fibrosis

Social Media Links:

Disease focus
: Idiopathic pulmonary fibrosis (IPF) is a rare, incurable lung disease. IPF involves the progressive scarring of the lungs that occurs when air sacs, known as alveoli, gradually become replaced by fibrotic tissue or scar tissue. As the scar tissue becomes thicker, it leads to stiffness in the lungs, making it difficult to breathe; the patient will depend on supplemental oxygen until the possibility of a lung transplant. IPF is the most common form of interstitial lung disease where there is no proven cause, and is often misdiagnosed and underdiagnosed.

Headquarters: Coopersburg, Pennsylvania

How did you become involved in rare disease: My father, Ron Wescoe, was diagnosed with idiopathic pulmonary fibrosis. We knew nothing about it, and we couldn’t find any support or education about it at all.  

Previous career: Clinical therapist for children and adolescents

Education: B.S. in communication disorders, speech pathology, and audiology from Bloomsburg University, and master’s degree in education in school counseling from Auburn University.

The Organization
Organization’s Mission: We provide support, education, advocacy, and resources for patients and their families living with idiopathic pulmonary fibrosis in order for them to sustain the highest possible quality of life.

Organization’s strategy: Our strategy is to create, implement, and facilitate support groups within close proximity of where these patients live. It truly takes a village because we coordinate and collaborate with medical centers. For this to happen, it takes a team effort.

Funding strategy: Fundraising is a work in progress and we are always seeking to learn about and explore creative revenue streams.   Currently, we fundraise through our IPF community awareness events, The Coopersburg 5K Run for Pulmonary Fibrosis and The Wescoe Walk for Pulmonary Fibrosis, and hospital sponsorships. This is the primary source of funding currently, but the goal is to expand more in the areas of grants, fundraising (team and individual) campaigns for races, private donations, and an Annual Giving Campaign which will be launched at the end of 2019.  

What’s changing at your organization in the next year: We are growing and developing. I want to prioritize accessibility to more support groups and education, and prioritize fundraising so we can continue to expand.  As with any rare disease, early diagnosis is important. We want to emphasize educational aspects for general practitioners so they can identify the symptoms and be able to diagnose people earlier. It’s a difficult disease to diagnose, and it’s often missed and under-diagnosed.

We have the privilege of serving on the Pennsylvania Rare Disease Advisory Council (PARDAC). We have had the opportunity of working with researchers, physicians, industry, people living with rare disease, and patient advocates throughout the past two years. It has opened my eyes to the broad scope of the needs of the rare disease community. I look forward to continuing the hard work of the Council in serving the rare disease community in Pennsylvania in the upcoming year.

We also are working on an exciting (and very needed) project to create an animated guide to educate patients and their families about IPF.  We are working with a wonderful company in Canada to make this happen. I’m very excited about the outreach and how it will help folks living with IPF move forward managing it the best they possibly can.

Management Style
Management philosophy: Work hard, never stop, and never lose sight of the vision.  I believe in collaboration. I am not walking alone. It is a collaborative effort with our patients, our families our medical facilities, the IPF industry, and other nonprofit organizations. We work with the Pulmonary Fibrosis Foundation and the American Lung Association. Building relationships is the key to our success and I believe our ability to do this is our greatest strength.

Guiding principles for running an effective organization: Collaboration, consultation, coordination. It’s important to communicate and outreach and develop opportunities. I developed Wescoe Foundation from grassroots. My background is in education, but the business aspects are very important. I teach myself and surround myself with people who are knowledgeable about that.

Best way to keep your organization relevant: Making sure our information is up to date and easily accessible. Outreach and communication are very important. Our website, social media presence, and word of mouth keep our message and brand relevant.

Why people like working with you: Passion. They can feel the passion I have for what my team and I do every single day. I get great energy from this work and the difference we are making and others can feel that energy. It’s contagious. We live it every day working with these wonderful people who are looking for information to help navigate this disease.

Mentor: This is definitely a learning and growing experience for me in order to support people living with pulmonary fibrosis, which has come from my cellular make-up and through my Dad. I had to learn by myself, but I have leaned on one of our board members, Jennifer Fernandes. She’s the Secretary of our Board and very business minded. For that type of support and guidance, I lean on her. There are people within the Pulmonary Fibrosis Community that I have a lot of respect for. We work very well together all over the country. If I have a question or idea about something, I won’t hesitate to reach out.

On the Job
What inspires you: Our patients and our families. I notice folks who come into our support groups and education programs and they are craving information. It’s imperative we provide this to them so they feel like they have the knowledge and tools to fight the fight. They inspire me, motivate me, and push me every single day to continue to support this cause. They are strong, committed, and dedicated people who need the information to survive, physically and emotionally.

What makes you hopeful: What makes me hopeful is that there is growing awareness for patient symptoms and support for their care partners. When my Dad was diagnosed with pulmonary fibrosis in 2003 we knew nothing about this disease.

Best organization decision: It’s important that people are provided with the support and education that they need. Being able to provide access to information and educational resources is our main goal.  When there is more education, there is potentially less fear in managing and navigating this serious lung disease. Over the past couple of years, we’ve grown from one support group to creating, implementing, and facilitating 12 support groups in several states.  Our reach continues to expand and I want to continue the growth of our organization.

Hardest lesson learned: Don’t be afraid to ask for help. This mission takes a village and it’s an incredibly big ship to steer. I am surrounded by incredible people that I can depend on to support me and the cause. I don’t have to go at this alone. There’s only 24 hours in a day.

Toughest organization decision: You mentioned the best organization decision. I mentioned the expansion and development of our programs. It was also the toughest one. It requires resources and people power to make that happen. What are the logistics involved? What are the resources need to make this become a reality? It was our best decision, but it was also our toughest. Those go hand in hand for me.

Biggest missed opportunity: I believe our organization has grown organically throughout the years. Every day is a learning opportunity. Timing is everything and this rings true in the work we are the doing and the journey we are on. The mission stays the same and I try to grab opportunities as they present themselves. I wouldn’t necessarily say there are missed opportunities, but rather learning moments.  

Like best about the job: I love to see how our patients and families develop strength through our groups and programs. I don’t like it, I love it. It’s a difficult situation, but there is always light and there is always hope. For any rare disease, you are not alone in this. We meet committed, dedicated people every day.

Like least about the job: That there is so much more to do and not enough time. I wish there were many more hours in the day to accomplish what we want to accomplish. That frustrates me because there is just not enough time and we have so much more to do.

Pet peeve: The lack of a sense of urgency.

First choice for a new career: I can’t see myself doing anything else.

Personal Taste
Most influential book: I drive a lot and I listen to a lot of Audible books and love autobiographies. The most recent one I listened to was My Own Words by Ruth Bader Ginsburg.  She’s a brilliant woman. I enjoyed listening to that.

Favorite movie: The Blind Side.  I found it very inspirational on never giving up on another person.

Favorite music: Fleetwood Mac

Favorite food: Ice cream

Guilty pleasure: I love watching documentaries

Favorite way to spend free time: Spending time with my family and my friends

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