June 23 – Day 11: Winston-Salem to Hickory, N.C.: WET!

Today was wet, to put it mildly. After a taxing ride on Wednesday, up and down hills in the heat of the sun, we were a bit sore and sluggish to start the day. First there were on-and-off rain showers, and then they just stayed ON. The rest of the day, there were heavy downpours, making the overall ride very challenging. The landscape was still green rolling hills, but we didn’t get to savor the scenery as much. We are looking forward to Asheville because we have heard that it is beautiful, but most importantly because our youngest daughter will be joining us there to become part of the support team. She feels strongly about being a part of the effort to raise awareness of Niemann-Pick and to help with the drive for a cure.

Barbara, Dick, Greg, and Renate

This evening we had a nice dinner with Dick and Barbara in Hickory. Dick is a Notre Dame alumnus, and many of his children are also Domers. We had a lot of great conversations about the ride, the cause, dentistry, economic development and entrepreneurship. After a day like today, it was certainly nice to sit down for a good meal and pleasant talk. Thank you so much for a wonderful evening.

Cathy, Showing off Her ND Gear

We had dinner at the country club in Hickory – and once again, we ran into some Irish fans. Cathy, who works at the restaurant, loves Notre Dame, loves to watch the Rudy movie over and over, and even has a leprechaun tattoo. She came out to see the van and signed it. When we were on the way out with Dick and Barbara, a family came up and told us their daughter is going to the Notre Dame Soccer Camp this year. The entire crew came out to sign the van – it was a wonderful night.

One of the Girls Goes to the ND Soccer Camp

So many people at Notre Dame have joined us in the fight against Niemann-Pick Type C, with different skills and different interests, all working together for the same goals. Tyler Hulett, who graduated last year and took my course on scientific entrepreneurship when he was a junior, has done amazing work in a behind-the-scenes task involving a test for drug effectiveness against NPC. Tyler studies epigenetics, which is the process that controls when and how often genes are used. Epigenetic medicine has shown great potential for hundreds of rare and orphan diseases including NPC.

Tyler works with Professors Paul Helquist and Holly Goodson and Dr. Norbert Wiech to advance the application of epigenetic medicine to NPC. He developed a manual test for checking drug effectiveness against the disease, using resources on campus instead of an expensive, complex automated test used elsewhere. With his invention, Tyler has confirmed experiments done by Professor Helquist’s colleagues at Cornell University as well as testing other drugs and treatment strategies. Among other things, he’s looking for ways to combat NPC with epigenetic chemicals that occur naturally in foods. Discoveries in that field could give families a way to help their children with diet and supplements long before drugs that require FDA approval might be available.

Like the rest of us, Tyler is moved with compassion for the children and families suffering with NPC. He knows that clinical trials take time. The need is urgent. To Tyler, that makes his contribution all the more significant and rewarding. Each of us is doing our part in this fight. For today, mine is riding a bicycle a few more miles, even when it’s raining, and Tyler is hard at work in the laboratory. Thanks, Tyler, and best of luck next year in graduate school.

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