Day 27: Ely to Fallon, NV

Today was a long and pleasant day on the road.  We were on Highway 50 the entire day, known as the loneliest highway in the country.  There were a few climbs and many down hills today.  The temperature was just right.  It was a day that was needed after the challenge of the day before.  When you looked ahead, all you could see was the long Nevada road tens of miles ahead—some stretches felt like I would never get there.  Although it was long; overall, the day was very good.

When we arrived at the hotel parking lot, I met a Notre Dame 2009 graduate and Naval Academy graduate. They are both officers on active duty and came over to ask about what we were doing.

Day 27

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Day 21: Denver to Granby, CO

The day started off wonderful with an interview with KUSA/NBC and a visit to Marley Coffee in Denver.  Marley has been such a great supporter of our cause.  The company’s headquarters in Denver is the coolest headquarters ever. I was even asked to ride my bike through it.  It was great to meet the wonderful Marley employees. Thanks for all of your support.

Interview with Gary Shapiro at KUSA in Denver

Interview with Gary Shapiro at KUSA in Denver


Today’s journey was perhaps the roughest I have experienced in all five rides. It started off so well.  Jim, a recent Notre Dame graduate and captain of the Notre Dame Cycling Team last year, joined us for the first part of the ride to Estes Park. On the way, we climbed to 8,000 feet and then descended to about 7,000 feet.

Jim and Greg

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Day 7: Pittsburgh, PA to Cleveland, OH

Today’s ride from Pittsburgh to Cleveland was very cold again. When we left Pittsburgh in the morning, the terrain was still very hilly, but once we crossed into Ohio, it flattened out. The sun came out and started warming things up when we were about 25 miles from Cleveland, so the end was very enjoyable. Over all, the day was pretty routine and straightforward. Read more »

Day 5: Philadelphia to Harrisburg, PA

We were very sorry to hear today that our wonderful colleague Bob Sedlack, professor of visual communication at Notre Dame, passed away after his courageous fight against ALS. In addition to being a highly honored and respected teacher, he was a great example who used his gifts to serve others, including  many underserved people in the South Bend community and around the world. Our thoughts and  prayers are with his wife, Theresa, and their children, Emma and Trey.

Robert Sedlack and his design students traveled to Pretoria, South Africa to work  on design projects aimed at addressing several issues affecting South Africa and Johannesburg.

Robert Sedlack and his design students traveled to Pretoria, South Africa to work on design projects aimed at addressing several issues affecting South Africa and Johannesburg.

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Coach Parseghian

Everyone has their favorite inspirational figure, favorite leader, or favorite coach. Ever since growing up in northeastern Ohio, Coach Ara Parseghian has been my favorite coach.  In addition to a phenomenal coaching career with two national championships, he is an extraordinary human being — overflowing with all of the Notre Dame virtues we value so much as a community and family.

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DART Gala Reception and Concert featuring Gladys Knight

I am looking forward to a special night during this year’s Road to Discovery–a concert by Gladys Knight at the Palace Theatre in Stamford, Conn., on Saturday, May 30 to benefit Dana’s Angels Research Trust (DART), one of our special collaborators in the fight against Niemann-Pick Type C (NPC).

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You can help us raise $25,000 for NPC research on 4/5 at the Parseghian Cup


I am excited to announce that  College of Science has teamed up with the Notre Dame men’s rugby team and the Ara Parseghian Medical Research Foundation for the 2nd annual Parseghian Cup on April 5, a rugby game between the Fighting Irish and the University of Arizona Wildcats to raise money for Niemann-Pick Type C disease.

A generous donor has pledged to give $25 to NPC research for every person who attends the game (up to $25,000).  Help make this the biggest game in Notre Dame Rugby history by bringing a big group of your family, friends, and neighbors to help us raise money for NPC research! Our goal is to get 1,000 people at the game so we can earn the entire $25,000. Read more »

Day 35: Silver Spring to Baltimore, Md.

Finish line!

Finish line!

It was a phenomenal end to the ride. As I rolled into the hotel, there were all of these Niemann-Pick families and children, and many Notre Dame Club of Maryland members. I was so honored to arrive to this cheering crowd. The kids the families were all there and it was such a great ending to this year’s ride. And even before I got off my bike, Coach Parseghian called to congratulate me on the fundraising success – a special moment in the midst of so many special moments. I was surrounded by these families whose passion, compassion, perseverance and magnanimity have been such an inspiration and shaped so much of how I think about life. It was overwhelming. Some of them wanted to get a picture with me, but I was the one honored to be in a picture with them. Read more »

Day 30: Charleston to Myrtle Beach, S.C.

Today I had company on the ride from Charleston to Myrtle Beach. Renate came to ride another leg with her sister Debby, and Dave, a friend from Osceola. When we arrived in Myrtle Beach, I got to see my daughters, Ally and Michaela, who were there with their cousins, Jake and Julia, and Debby’s husband, Matt. It was great to see them after more than a month. I even tried surfing at the end of the day – I think I’m going to stick with biking!

Myrtle Beach

The ride today was pretty straightforward, and the wind was favorable. The traffic was really heavy as I approached Myrtle Beach, a resort city with fewer than 30,000 permanent residents that attracts about 14 million visitors a year. Most of the way was flat, straight seacoast road – undemanding terrain that allows your mind to wander.

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Day 26: Auburn, Ala. to Fayetteville, Ga.

Welcome to Georgia

Welcome to Georgia

Today’s ride was relatively long with a lot of cloud cover and sprinkles all day as we biked from Alabama to Georgia. Another routing glitch added some extra miles. You’d be surprised what a difference a few miles here and there can make when you’re biking100 or more miles a day, day in and day out. Your legs feel the extra miles add up. I’m getting more excited today because the end is now in sight – I am looking forward to meeting the families and children affected by NPC at the National Niemann-Pick Disease Foundation 21st Annual Family Support and Medical Conference in Baltimore.

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