Letters, Part 3: To the PHA Community

June 11,2014

I’ve been to plenty of conferences. Massive conferences held in giant convention centers, filled with a generous mix of pretentious and humble scientists, eager and bored graduate students, extravagant and despondent vendors. When Patty asked if we wanted to go to the 2012 International PHA Conference in Florida, I wondered how it would compare.

It didn’t.

We made the trip to announce the formation of our team to the PHA community, but so much more than that happened in those hot June days.

The PHA Conference marked a huge turning point for me. While I was completely inspired by the stories Patty shared with us about her patients and their plight, the vigor that seemed to underline, highlight and boldface the importance of what we were doing didn’t resonate with my core until the day I met the people we were doing it for.

We were in a ballroom, and I vividly remember spotting this woman who just literally lit up the room. Her smile was gorgeous and contagious, and her laugh was borderline rowdy (just like mine). I looked to Stacie and said “We have to introduce ourselves. I have to meet her.”

Her name was Diane Ramirez, and she turned out to be a member of the PHA Board of Trustees. She is a major advocate for PH patients, a response to her own diagnosis and the loss of her own brother to PHA. She became an instant friend of Team PHenomenal Hope, and started rushing us around the ballroom to introduce us to her friends (of which there were many!). She said we were the inspiration for her to pair up with PHer Janet Mabe to walk a combined 135 miles over one month last fall to raise awareness and funds through PHA.

In that same ballroom we met Kathleen Richardson. Like Diane, Kathleen was a ball of positive energy. She introduced us to her husband and told us about her own cycling adventures. She had PH, but responded well to medications. We kept in touch after the conference, and when she came up with the idea to do her own 3,000 mile cycling challenge, we whole-heartedly encouraged her decision. Her goal was to ride the distance of RAAM between November (PH Awareness Month) and our team’s completion of RAAM, but she finished well ahead of schedule, tallying her 3,000th mile in early May. Kathleen’s story is a slam-dunk success—and her love of adventure and absolutely astounding dedication to complete the mission she set for herself has been a huge inspiration for the team. Whenever I read an email from Kathleen it feels like the words are springing off the page with life; she is one of the most authentic people I have ever met.

It would be impossible for me to mention all of the people in the PH community that we have met and that have impacted our lives in one blog, but it would be a travesty to not mention Merle—a little SOB (short-of-breath), and proud of it! She invited the team to dinner at her home and made me eat cauliflower—and I liked it for the first time in my life! But more than that, Merle has been a huge supporter of the Team since its inception. She has put the us in the spotlight during her Walk Phor a Cure events, helping us to get the word out and continue to interact with the PH community in new and meaningful ways.

Merle always says, “I have PH, but PH (the dastardly disease) doesn’t have me.” And the statement rings true across the whole community. Despite their limitations, we observed an overwhelming sense of pride pouring out of the people we met; they were kindred spirits with a love of life and adventure, fighting for their lives, fighting for each other. After the PHA Conference, I wanted to be a part of that fight, too.

To the PH community and PHA, I give you thanks.

By showing strength in your daily battle with PH, you have given me courage to face my own struggles.

As my efforts rise and I struggle to breathe, I no longer feel defeated, but instead feel greater resolve.

Even when my legs feel weak, I feel compelled onward because we are in this together, and for a purpose greater than any race.

Know that when the team lines up under the Race Across America banner on Saturday, June 14, 2014, you will be foremost on our minds and in our hearts. We are honored to represent the PHA and the incredible people it stands behind.

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