All posts by Amity Westcott-Chavez

Adam’s Legacy: A Commitment to Eosinophilic Disease Research

We are deeply grateful to Mike and Robin Rantz for sharing Adam’s story, and for honoring his memory by raising funds to advance research and awareness for eosinophilic diseases.

At the age of 32, our son, Adam, died unexpectedly from a massive heart attack.

Just eight years prior, he was diagnosed with a disease we had never heard of – eosinophilic fasciitis (EF). It took months to find the right doctor and to get the tests to get a definitive diagnosis. During this time, Adam was in extreme pain. His upper and lower extremities were so inflamed that it was difficult for him to use them. The delay in his care was beyond frustrating.

For the last nine years, we have been searching for answers as to why, at such a young age, our son’s heart failed.

Was it related to the EF? Was it related to the medications used to treat EF?  Was it a heart condition no one had picked up on? So many questions!  It took a long time, but we realized that no one had the answer.

In looking for an answer we found a way to honor Adam’s memory and help bring awareness to this rare disease. Fundraising for APFED has helped us connect with folks like us. Folks looking for answers. Folks looking for better treatment options.

Adam’s older brother, Ethan, took to the internet shortly after Adam’s death, in search of answers and found APFED.  With help from Julie at APFED, they organized the first AMR memorial golf outing. No one had ever heard of EF but by the end of the day of the event, our friends and family were able to pronounce eosinophilic fasciitis.   It was a start.  Ethan and Julie organized three memorial golf outings until COVID shut everything down. Over those 3 years we raised awareness and $50,000 to support eosinophilic disease research.  We are so proud of his efforts.

This year, my husband has spearheaded a fundraising event for APFED once again. Thanks to his efforts, APFED has been named the beneficiary of our community classic car show, Cars for a Cause. It’s a yearly car show that benefits a different charity every year. This year it’s being held on Sunday, September 14, in Quakertown, PA. You can learn more about this event.

Fundraising has given us a way to stay connected with Adam. To honor his memory. It’s not very easy reliving all the pain and hard times Adam went through but it’s a way of grieving as we continue to heal.

To support this event in Adam’s memory, please consider donating here.

Our hope is to bring more awareness to eosinophilic disease and raise funds so the research can continue and one day provide better treatments and maybe even ways to prevent this auto immune disease.

For more information about fundraising opportunities, please email APFED fundraise@apfed.org.

Protecting Your Respiratory Health During Wildfire Season

As wildfire season intensifies across many regions, those living with asthma—including eosinophilic asthma—face heightened health risks that extend far beyond the immediate fire zones. Wildfire smoke can travel hundreds of miles, creating hazardous air quality conditions that may persist for days or weeks.

For people with eosinophilic asthma and other respiratory conditions, smoke exposure presents specific challenges. The fine particulate matter in wildfire smoke can penetrate deep into the lungs, potentially triggering inflammation, worsening existing symptoms, and increasing the risk of severe asthma attacks.

The impact goes beyond physical symptoms. Wildfire seasons can disrupt daily routines, limit outdoor activities, and create anxiety about when the next air quality alert might come. Understanding how to prepare for and respond to these conditions is essential for maintaining respiratory health and quality of life.

APFED has compiled the following resources to help you navigate wildfire season more safely. While this list isn’t exhaustive, these tools and guidelines can help you monitor conditions, protect your health, and know when to seek medical care.

General Resources

A Mid-Year Thank You to Our Incredible Community

As we reflect on the first half of 2025, we’re overwhelmed with gratitude for the amazing APFED community, individuals like you who fuel our mission every single day.

From powerful advocacy efforts to grassroots fundraising, your dedication has helped turn hope into action. Together, we’ve:

  • Celebrated key advocacy wins
  • Advanced awareness in countless new spaces
  • Reached critical fundraising milestones
  • Empowered patients and families through education and support

You’ve shared your personal story, contacted legislators, amplified our message on social media, volunteered at Eos Connection, or donated to sustain our work. You’ve made a lasting difference in so many ways:

  • Your lived experience has become a force for change.
  • Your support has helped train providers and educate newly diagnosed families.
  • Your actions have helped APFED build a future where eosinophil-associated diseases are better understood and better treated.

Because of you, APFED is more than an organization; it’s a movement.

From all of us at APFED, thank you for your time, your energy, and your unwavering commitment. You are the heart of everything we do, and we’re honored to continue this journey together.

With gratitude,
The APFED Team

End of the Internet: Highlighting the Long Road to Diagnosis

Ever clicked through page after page, desperate for answers—but still without a diagnosis? You’re not the only one. That’s the powerful insight behind the new short film, End of the Internet, which follows one woman’s odyssey to uncover her eosinophil-associated disease diagnosis.

On average, patients wait nearly 5 years and consult more than seven specialists before receiving clarity.

This interactive piece, designed for healthcare providers, puts a face on the statistics and challenges medical professionals to recognize the journey, validate symptoms, and support patients faster.

Available at ENDOFTHEINTERNET.INFO, the film is free to stream and share, amplifying the reach of this vital message.

You can help make a difference:
Watch the film
Share it with your networks, especially providers
Tag your posts with: #diagnosticjourney #raredisease

Let’s ensure no one has to scroll “to the end of the internet” for the answers they deserve.

APFED Featured on Advocacy Podcast

In a recent episode of Patient Advocacy Voices by Sanofi, APFED Executive Director Mary Jo Strobel joined hosts Eric Racine and Preeya George-Guiser to share how APFED is driving change for those living with eosinophil-associated diseases.

Strobel reflected on her personal journey into advocacy, which began with volunteer work and deepened after a family member’s diagnosis with eosinophilic esophagitis (EoE). She highlighted APFED’s grassroots origins and its evolution into a national organization with a mission to improve lives through education, research, and policy change.

The discussion explored APFED’s approach to turning awareness into action, from national campaigns like World EoE Day to targeted education efforts that support earlier diagnosis and better outcomes. A standout moment included the impact of a Times Square awareness billboard—where a passerby recognized their symptoms in real time.

Strobel emphasized that APFED’s strategy is driven by data and patient input. Initiatives like the Life with EoE report offer a blueprint for meeting real-world needs, while the organization’s policy and provider outreach are grounded in measurable insights.

As Strobel reflected on her leadership approach, she emphasized a guiding principle that shapes APFED’s work: “Keep the patient front and center of everything.” Whether it is awareness, policy, or research, every decision, she said, must come back to what best serves the community.

Listen to the Full Episode
“Building Awareness, Driving Change: Inside APFED’s Strategy for Rare Disease Advocacy”
Available now on:  Patient Advocacy Voices, Apple Podcasts, Spotify, and More