Pheo Para Gala 2026 (September 20, 2026)

  

"Do not wait for a diagnosis to live with urgency. Ask yourself tonight, what would I do differently if time were short? Who would I love harder? How would I serve more deeply? And then begin doing those things now. Running has taught me that every step matters. Nursing has taught me that every interaction matters. Cancer has taught me that every moment matters. And this community has taught me that every person matters.

The art of dying is not a surrender of life. It is the understanding that living well and dying well are inseparably connected. It is the decision to live deliberately, love urgently, serve generously and allow ourselves to be carried when our own strength is no longer enough. However much time we have, let us use it well. Let us make the words 'pheochromocytoma' and 'paraganglioma' known. Let us carry one another and be a force for good."

- Jonathan Pascual 

 

Four years ago, I attended my first Pheo Para Gala, still overwhelmed with grief over losing Scott but wanting to do something to help pheo para patients and families. Last night, it was wonderful to reunite with dear friends and meet new friends in this incredible community of patients, family, and volunteers. I was so inspired by all of the speakers, who each shared their courageous journey and showed in their own way that a diagnosis does not define who they are.

 

Bethel's beloved husband David was diagnosed with pheochromocytoma not long after their honeymoon, and he passed away in 2021. Bethel went on to write a book about her grief journey as a widow, with proceeds supporting the Pheo Para Alliance

 

Jonathan Pascual was diagnosed with Stage 4 paraganglioma in 2022 and incredibly was able to complete the IRONMAN World Championship 2 years later. I was so inspired by his speech.

 

Lacey - metastatic pheo/para patient, Air Force lieutenant colonel, mother, rare disease advocate, and all around amazing person. Her support family matched $10K in donations this weekend!

 

Thanks to all who gave so generously to support the world's first pheo para patient and provider registry, built by the Pheo Para Alliance on the National Organization of Rare Disease (NORD) registry framework. This registry will collect patient data, which is critical for rare diseases, to accelerate research, improve patient care, and find treatments. 

 

Betsy (second from right) - our fearless Chair of the PPA Board of Directors. I don't know where we would be without her. She donated $100,000 in honor of her dear friend's family who lost their son, in the hopes that others' sons and daughters might be saved in the future.

 

So privileged to advocate with these ladies!