2006 Conference Story

Ken Schmidt

In keeping with this year’s conference theme, I’d like to use analogies within my story:

My road trip began in 1998 when my wife of only 5 years was diagnosed with PPH. Joanne’s brother had been diagnosed 3 years earlier with this awful disease and so Joanne was motivated to find as much information as she could about PH.

Joanne SchmidtIn 2000, Joanne was like a mid-sized sedan traveling the PH interstate, while I was just like a small Uhaul trailer. Joanne found the PH map and headed out to Chicago, while I tagged along hoping to find useful items to carry back to Long Island. Joanne unhitched me at the male only caregivers session, which was co-led by Jerry Paton. Jerry was like a confident 18 wheel big rig. He had been traveling the PH interstate and offered us honesty, compassion, and hope. He told us there would be potholes, speed bumps, and slippery conditions ahead, but he also saw brand new roads being paved, that someday we would be traveling along.

Two years later, Joanne, ever growing, was more like a flat-bed car hauler, while I was more like a distressed car found in a barn. I had potential for being road worthy, but I still needed Joanne to get me there.

So in Irvine, California in 2002, Joanne off loaded me as a volunteer for the position of co-leader in the male caregivers group. Jerry Paton was seated next to me and again his confidence offered me some assurance that I too could travel the PH interstate amongst friends.

Another 2 years passed and I was glad to volunteer as a male caregivers group co-leader in Miami. Joanne was a big rig 18 wheeler now, actually helping coordinate the conference, and I was more akin to a teenage boy’s first car. I could get around town but didn’t think I was ready for the big trips on the interstate.

My group session was a bit rocky and it felt like we went off-roading for a bit, but my 2 co-leaders and I got some positive feedback, and Jerry (who had sat in as an attendee this time) offered more encouragement after the session.

Here we are in Minneapolis in 2006. Six years and now my 4th conference. I once again gladly volunteered to co-lead the male caregivers group. Together with Larry Moody, we had our first of 2 sessions for this conference.

It may be a small entry in the PH conference program, but I believe this is one of the hardest groups to lead. Men talking about how they feel? It would be easier to get a man to stop and ask for directions!

After our first session concluded, we got some really positive feedback, so I’m feeling more like an SUV on the PH interstate today. I know I can hold my own, but I also recognize there is more that I can be.

At this conference I truly felt that I could give hope and direction to others as well as learning from other attendees. Conference is a more balanced two-way street for me, now that I am a volunteer.

When I spotted Jerry Paton Friday evening, I took the time to tell him how much he had helped me, and he was warmed by my words.

By becoming an active participant, I have helped myself, other attendees, and the cause of PH on my wife’s behalf. The PH interstate is not just about the destination, it is about helping others who have broken down on the roadside get going again.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.