July 11 – Last Day: Greenville to Dallas: Crossing the finish line, reaching for the goal

Our last day turned out to be much more challenging than we anticipated. It was only 55 miles, so we didn’t think anything of it. However, for the first 20 miles or so the pavement was rougher than any we had experienced on the entire trip. There was no shoulder on the road, and Texas drivers seemed to be in a hurry that morning. Then came the sun and heat, with temperatures above 100 degrees as we arrived in downtown Dallas. However, we were so excited to be completing the 2,200-mile ride, and we are so eager to tell everyone about the experience – the NPC families, children, doctors and researchers – that the few hours on the bike seemed to fly by.

We're in Dallas!

High five on nearing the end of the ride

We finished in downtown Dallas, and Jim, one of my advisory council members, and his wife were there to greet us with Sean from Development. Jim supplied everyone with blinking four-leaf clovers, and thereafter everyone in the hotel seemed to be gleaming with Irish Spirit.

Made it to Downtown Dallas

Sean, Jim, Ann, Greg and Renate after the ride

The Crawford family is happy to be done with the ride

After we arrived, we had the opportunity to meet one more NPC family, a fitting reminder of our reason for the whole ride. Thad is the father of two NPC children – Katie, who is five, and Andrew, who succumbed to the disease five years ago. He told us about the long process of his son’s diagnosis – a colleague happened to tell him about NPC when they were discussing Andrew’s health, and Thad passed along the information to his doctor. Only after this home diagnosis was Andrew tested for NPC. This was the second family we met on our trip with more than one NPC child, and Thad said something we will never forget: “For parents with multiple NPC children, you are going through the hardest thing in your life and know you have to go through it again.”

Renate, Thad, and Greg

Thad told us about Andrew’s love for baseball and basketball and how he could pitch and bat both left- and right-handed. Andrew was very social and liked to imitate Barney to introduce people he met. He lost his battle with NPC at the age of nine. Thad spoke about Katie as one of the funniest people he knows: she jokes around and loves to do and try anything, even karate. Thad was active on the board and research subcommittee for the National Niemann-Pick Disease Foundation (http://www.nnpdf.org). He also told us that Niemann-Pick A, B and C get very little attention in medical school textbooks – in some cases, only one paragraph for all three diseases.

Shortly after our meeting with Thad, we had the opportunity to visit the University of Texas Southwestern, an institution with a lot of NPC research taking place. We were thrilled to see the facilities, a reminder of how much progress we are making against NPC. Professor Joyce Repa toured us around the building and introduced us to her colleagues and many of the students. We were so excited. The night before, we had had dinner with Professor Repa and many of her students and colleagues. We gave them Road to Discovery t-shirts, and when we visited today, they were all wearing them! That was awesome to see. The UTSW effort is significant and very innovative – we were very fortunate to learn more about the forward-thinking NPC science taking place there.

In the lab at UT Southwestern

In the evening, we had dinner at Bugatti’s Italian Restaurant with many Notre Dame alumni. Once we walked into the restaurant, we knew Jim was already there – everyone was wearing the flashing green four-leaf clovers. Bruce in Development organized it. We had a wonderful dinner. Renate then gave a presentation on our ride and all of the wonderful people we met and experiences we had. I followed up with a presentation on some of the University and College of Science initiatives. A big thank you to everyone who organized and hosted this wonderful evening of discussion and friendship, full of Irish spirit and Notre Dame stories. The night culminated in everyone signing the van and taking photos of it and next to it – even the waiters and waitresses came out to sign the van and ask for t-shirts.

Alums signing the van at the last event

Alumni and friends in front of Bugatti's

The Notre Dame family at the final event

A long day, a great ending to our ride, and we are very happy to be on our way back to Notre Dame. We have a lot of great stories to tell you all. We wish to thank you for following our blog each day and commenting and sending us inspirational emails. We had a journey of a lifetime. We will always remember all of those we met along the way, and we will certainly keep in touch.

We wish to thank all the Irish teams for the shirts. We were proud to sport them on the ride and show our Irish spirit!

Look for one final blog post this week that will give a summary of our trip.

Thanks again for all of your support.

Go Irish!

3 Comments so far

  1.    Anneke de Bont on July 11th, 2011

    Proud of both of you Great Job for a very good cause.Anneke. Heel goed gedaan heel veel liefs mama and also the support team liefs Oma

  2.    Janice Shearer on July 11th, 2011

    Great Job ! Thank you for your hard work.
    Great to meet all five of you in Arkansas.
    Glad all went well. Maybe we will meet again