July 6 – Day 24: Texarkana, Arkansas, to Mount Pleasant, Texas: Two More Days!

The ride directions were pretty simple today: turn left out of the hotel parking lot in Texarkana and go straight until you hit Mount Pleasant, Texas. The wind was favorable and the sun was bright, although the traffic was a bit hectic to start the day as we immediately crossed the state line. As we entered Texas, we found longhorns just about everywhere, and Greg fit right in with the cowboy boots he had worn in the “Dancing with Our Stars” fundraiser earlier this year for the Center for the Homeless in South Bend.

Hanging out with the longhorns

Riding in the boots

"Heavy" traffic

Tonight we met with an NPC family – Tracy, the mother of Tristan, and her two sisters and cousin. Tristan is 9 years old. She had a big smile, and she seemed to like bald guys. Tracy told us that Tristan’s physical therapist has a shaved head and she really likes it – so she took a liking to Greg as well. Everyone signed the van tonight, and all the girls were already sporting their bright green Road to Discovery t-shirts. Tracy has been following our blog. She found out about the ride through one of the NPC email exchanges, and they drove an hour to meet us and see the van. We are so grateful they were willing to make the trip – it was such a pleasure to meet them.

Tracy and Tristan sign the van

Tristan with her mom and sisters

As we were riding today on a relatively flat, straight road to Mount Pleasant, I started to think more about our discoveries and entrepreneurship efforts at Notre Dame. Many of the drugs currently being used to treat rare diseases were discovered in academic or university laboratories. In order to make these discoveries available to patients, the drugs needed to be evaluated for safety and efficacy, which required a transfer of responsibility from the University to a drug development company. The same is true of NPC. Funded by the Parseghian Foundation, efforts by scientists from the Chemistry Department at Notre Dame and the Biochemistry Department at Weill Cornell Medical College recently resulted in the breakthrough discovery of a compound with potential for treating NPC. The next step in the development process has begun with the formation of Lysomics, LLC., whose sole purpose is to take this compound to the clinic. Lysomics has taken the first step by opening consultations with the FDA. We are moving closer and closer to the goal line.

Out here on the Road to Discovery, we are moving closer to our goal line, too. We are only two days away from finishing the trip. We are so fortunate to have met so many great families, children, researchers, doctors, nurses, Notre Dame alumni and friends, and total strangers whose hearts were moved when they heard the story of our mission. The ride has been a challenge at times – the road rough or steep – but we remember the great team we’ve joined, fighting for the lives of those beautiful children, and the miles fly by. We can’t wait to get back home to tell everyone about these amazing experiences. See you soon!

1 Comment so far

  1.    Holly Roberts on July 10th, 2011

    Greg and Renate are absolutely amazing people. Take a moment and think about what they have just done for OUR children. ..what they have done to raise awareness to NPC. Every city that they visited they spoke to NPC children and their families. They reached out…they wanted to hear from the parents that have lost their children to NPC. We lost our daughter Erin to this horrific disease over 6 years ago..yet Greg and Renate wanted to hear our story…they wanted to know ab out Erin…who she was…they wanted to know about her sister Rebecca who is not affected by the disease. God Bless Greg and Renate…2200 miles on a bike…from Boston to Dallas…the amazing race…thank you Greg and Renate….
    Both of you are a gift from Heaven..All of the NPC families thank you for what you have just accomplished…

    Gob Bless…

    Michael & Holly Roberts