Day 29: South Lake Tahoe to Sacramento, CA

Today was an incredible day of riding. I had several riders join me today—Bruce from Development, as well as Tom and Scott, both Notre Dame Law alumni.

Well, the way out of Tahoe is up, up and up.  We climbed and climbed to the summit of Echo. At the top was a spectacular view where we could look back and see Lake Tahoe.

2015-06-24_17.42.08

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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 20: Yuma to Denver, CO

The ride was a bit wet today. There was mist in the air most of the day as we climbed from about 4,000 feet to over 5,000 feet. You can definitely feel the effects of the change in altitude on your breathing. We began the day in Yuma, which is a quiet and small town, like many small towns on today’s route, and biked to the busy and vibrant city of Denver.

We had a wonderful alumni event at the Spire.  Cindy and Mike Parseghian were there and Cindy presented her family story about their fight and the loss of their three children to NPC. No matter how many times I listen to the story, it never gets any easier to hear.  Because of their fight, courage and devotion, the Notre Dame family has rallied behind their cause. Erica from the Notre Dame Federal Credit Union also visited the event. NDFCU has been such a wonderful sponsor over the last four years. The credit union has a new program called Elevate that further supports our fight against rare diseases. 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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Day 4: Rest Day in Stamford, CT

After a perfect day of riding through the Pennsylvania’s Amish country, we drove up to Stamford, CT for a very special event, the annual gala reception and concert to benefit Dana’s Angels Research Trust (DART). DART is one of our special collaborators in the fight against NPC and was established by Phil and Andrea Marella and named for their daughter Dana.

Meeting the Marella family in 2011.

Meeting the Marella family in 2011.

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Day 1: Riverhead, NY to Poughkeepsie, NY

It was a great morning with the inaugural dip of my bike into the Long Island Sound.  We were a bit scared climbing down a big sand dune and I almost took a spill before we even started that morning! Thanks again to everyone for joining us.

I had a nice first day on the bike.  There was a big 30 mph wind behind us as we tracked from NYC to Poughkeepsie, NY.  That wind was really helpful as we faced some of the bigger climbs.  I am not looking forward to biking back into that wind as we head south towards Princeton, NJ tomorrow.
Day 1: Walkway Over the Hudson

Walkway Over the Hudson

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Transportation Services Team

Marty Orgen and his team at Transportation Services have been extraordinary partners for the ride over the years. They have always been so supportive of our efforts in the College of Science to fight rare diseases, and their participation in and passion for the cause and the Parseghian family’s incredible story.

2015 Road to Discovery Van

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Day 27: Fayetteville to Sandersville, Ga.

Despite the perfect weather and the accurate routes, today’s ride was a brutal challenge – long miles of rolling hills and 6,000 feet of climbing. It was one if those days I had to pull out all the stops to finish. At one of the food stops, I took a walk around the van and looked at all the signatures. I know so many are behind me. Then I saw the photo of Michael, Marcia and Christa Parseghian; the little magnet picture of Jessica and her little saying “never give up;” Shanna’s “thank you” next to her name and the bandana she gave me; the notes and the Clu bracelet from Amy and Amanda. I saw the reminder of Dana, who so recently finished her fight with NPC. These are extraordinary kids and inspiring families. I got back on the bike and pushed it to Sandersville. Read more »

Day 3: El Centro, Calif, to Yuma, Ariz.

Day 3.1Today was supposed to be an easy ride – fewer miles than normal, no climbing whatsoever on the flat terrain, and we would start early enough to get off the bikes by 10 a.m.  However, the roads were terrible – the worst roads I have ever ridden for such extended periods of time. My arms and legs were getting beat up, as well as my bike – it was just a bad, bad route.   Read more »

Day 1: Long Beach to La Jolla, Calif.

Cindy, Amy, Amanda, GregMy new friend Amanda came down to see me off from the water. I met her with her mom Amy at the Pebble Beach dinner. Amanda, who is 21, was diagnosed with NPC two years ago.  Thank you, Amanda and Amy, for coming so far down the coast to see me start my ride at the Pacific.  Amanda gave me a bracelet from her horse “Clu” to keep me safe on my ride, and I gave her one of my ride jackets (too big to fit perfectly, but fine for such a big Irish fan).  I proudly wear the bracelet on my wrist with all of the other wristbands from NPC children – I promised all of them that I would not take them off until we had a cure. Read more »

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