Ride Updates

Day 31: Milpitas to Pebble Beach, CA

Well, I made it! 3,500-plus miles from Long Island, New York, to Pebble Beach, California. What an amazing trip! Bruce from Development and Tom, an Notre Dame alumnus, rode with me again today. It was a pretty hilly ending when we rolled into Pebble Beach on 17-mile drive. The Monterrey landscape is beautiful, with rolling sand dunes just about everywhere. We had a big dinner event on the pier at Pebble Beach with all of the golfers and guests last night. It is the largest turnout ever, since the Pebble Beach fundraiser began four years ago. Mike and Cindy Parseghian dunked the front bike tire in the Pacific with me at the evening event, signifying the end of my ride. It is going to be an incredible weekend.IMG_3530 Read more »

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 22: Granby to Craig, CO

Today started out very cold for biking; it was just over 40 degrees when we left.  I must say that the ride from Granby to Craig was the most beautiful stretch of the trip so far. There was hardly any other traffic on the Road to Discovery, but every direction presented sheer cliffs, sagebrush, and the white rapids of the Colorado River. Most of the mountains still have snow on them.

Granby to Craig, CO Read more »

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 19: McCook, NE to Yuma, CO

Beautiful sunrise in Nebraska

Beautiful sunrise in Nebraska

Today’s ride from McCook, Nebraska to Yuma, Colorado was a really nice ride.  The terrain was sharper with bigger hills and valleys, and a plush green landscape with lots of cattle as far as the eye could see.  With it being Sunday, it was a lonely road and we did not see too many people or cars, but the vast and lively landscape kept me engaged.  Not sure why, be we saw lots of turtles crossing the road today. As we approached Hagler, Nebraska, there was a sign that said Kansas one-half mile south.  Since I have not been to Kansas on any of my previous bike rides, we took a little detour.

Welcome to Kansas!

The Road to Discovery stops in Kansas for the first time.

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Enshrinement Parade and Ride Wrap-up

We had a fantastic time at the 2011 College Football Hall of Fame Enshrinement parade. Thank you, Victoria Maione, for inviting us to be a part of this event. Thank you, likewise, to everyone who came to support Renate and me and biked with us! We really appreciate you joining us early in the morning on a weekend and on what proved to be a very hot day shortly after the sun came up. It almost reminded us of biking through North Carolina and Tennessee, where it was already 80F when we left at the crack of dawn each day. We showed off our support van, and it got many more signatures, both before the parade and afterwards, during the festivities in front of the College Football Hall of Fame.

The parade proved to be a perfect conclusion to our ride. Riding past the Hall of Fame, where Coach Ara Parseghian was inducted in 1980, 14 years prior to finding out that his grandchildren – Michael, Marcia and Christa – had Niemann-Pick Type C, we were thinking about the meaning and purpose of our ride and all of our fundraising efforts: to defeat this terrible disease once and for all, so that no parent or grandparent ever had to endure again what the Parseghians endured and what so many other NPC families struggle against every day to save their children.

We would like to thank everyone who helped us and supported us in the organization and execution of the Road to Discovery ride. We couldn’t have done it without all of your participation and encouragement. We thank the families and researchers who met with us along our route to help us spread their message and publicize their cause. We thank all the Notre Dame alumni and friends who went out of their way to meet with us and host us in their homes. We thank everyone who donated so generously to this cause; without funding, research and advances towards a cure or treatment would not be possible. And finally we thank our families: our parents, siblings, and our two lovely daughters, Ally and Michaela, for all the love and support they gave us on the ride.

2011 College Football Hall of Fame Enshrinement Parade – Saturday, July 16th

Tomorrow, Saturday, July 16th, Renate and I will be in the 2011 College Football Hall of Fame Enshrinement Parade. The parade starts at 9:00 a.m. at Howard Park in South Bend. Our unit is called “Road to Discovery: Riding for the Lives of Children,” and anyone who wishes to join us is welcome. Please contact Katerina Lichtenwalter at klichten@nd.edu or 574-303-8735 if interested. Come to Jefferson Boulevard (between Eddy Street and St. Louis Boulevard) by 8:45 a.m. and look for cone number 78. “Rudy” will be there, as well as the Irish Leprechaun, cheerleaders, a bicycle-riding stilt-walker and other performers. Come by bike if you can!
Spectators are also very welcome. We’ll have t-shirts for the first 100 people and the Road to Discovery van parked in the line-up after 8:00 a.m. and later at the Hall of Fame for signatures.

Hope to see you there tomorrow!

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

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July 7 – Day 25: Mount Pleasant to Greenville, Texas: 55 Miles to Go

Today, we left early to avoid the heat. Some of the roads were rough, but the weather was favorable for an early ride and the morning sky was beautiful.

Off to a very early start

Beautiful sky

Great helper

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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. Read more »

July 5 – Day 23: Camden to Texarkana, Arkansas: Sneaking up on Texas

Today was a pleasant ride into Texarkana – the Arkansas side, but within sight of Texas. After a major storm last night, with a lot of rain, lightning and thunder, the weather was just beautiful. As usual, we started early to avoid the heat.

Zipping by the van

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July 4 – Day 22: Pine Bluff to Camden, Arkansas: Happy Fourth of July!

No fireworks for us on the road today, which is just fine as we make steady progress toward our goal. It was really warm, with a bright, sunny start to the ride, and temperatures reached into the 90s, but the ground was level, and the thunderstorms held off until we had arrived in Camden – so, a very pleasant day overall! We passed through Kingsland, Arkansas, which was home to Johnny Cash.

Happy Fourth of July from Arkansas!

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July 3 – Day 21: West Helena to Pine Bluff Arkansas

Today was a long day – over 105 miles across flat land – and very hot, with temperatures above 100 degrees by day’s end. To avoid as much of the heat as possible, we started very early, putting all of our reflectors and lights on our bikes and bodies in the predawn darkness. Getting to watch the phenomenal sunrise was a great reward for the early rising. As the heat kicked in, we drank a lot of water to stay hydrated.

The early morning get-up: lights and reflectors and the whole shebang

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July 2 – Day 20: Collierville, Tennessee to West Helena, Arkansas: Three States in One Day

Today was a long, hot day. It was a lot of fun since we crossed into to Mississippi from just outside Memphis for about 30 miles, then over the Mississippi River and into Arkansas – three states in one day. Although very hot, there is probably very little climbing left until Dallas. Today’s ride was flat, flat, flat. We had dinner at Blues Bayou, a restaurant with alligator bites as a specialty. We weren’t feeling particularly adventurous and went with the streak instead. Overall, a very uneventful day. After dinner, we went to bed early, as we had the night off for the first time in a long time, giving us time to rest for what promises to be a hot and long (>100 miles) day tomorrow.

Leaving Memphis

Our Second State Today

Our Third State Today!

July 1 – Day 19: Nashville to Collierville, Tennessee: The Longest Day

Today was our longest day – 150 miles! We started very early, at 4 a.m., to get in as many miles as possible before the heat set in. By the end of our ride, the temperature was 93. In addition, we faced over 5,000 feet of climbing for the first 125 miles. As we approached Collierville, Tennessee, just east of Memphis, the landscape flattened out a bit. All in all, it was a challenging day because of the large number of miles, but the weather, although hot, was just spectacular. Renate pointed out that I have my own city in Tennessee – Deanburg! It’s a very small farming community.

Early Start

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June 30 – Day 18: Manchester to Nashville, Tennessee: Everybody Needs A Helping Hand

Today we had the tremendous honor and pleasure of meeting Amy Grant (http://amygrant.com) after a fine ride across the beautiful Tennessee countryside. We were a bit nervous on the way to meet such an accomplished singer and songwriter – 30 million albums sold, 25 Dove Awards, six Grammy Awards. We have several of her songs on our iPhones for the ride, including “Everybody Needs A Helping Hand,” “Children of the World,” and “Better Than A Hallelujah.” Amy, who performed at the Morris Performing Arts Center in South Bend last March with Michael W. Smith on their “2 Friends Tour,” is a friend and longtime supporter of the Ara Parseghian Medical Research Foundation. We were so excited to meet with her today.

Amy Signing the Van

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June 29- Day 17: Crossville TN to Manchester TN: down to single digits

We are counting down to July 8, our last day. Today marks our 17th day, so we only have 9 days left – down to single digits! Today the ride was spectacular. The temperature was perfect, the sun was shining over the hilly landscape, the pavement was smooth, the shoulders were broad, and the winds were behind us – they pushed us all the way to Manchester. This was a great active recovery day after our hilly 100 yesterday. It’s funny how fast the day goes when conditions are perfect. We did run across a town called Pleasant Hill – we did not think there were any pleasant hills after yesterday – and we got a big laugh out of it. Also, Renate got her first flat tire! Must have been a result of her boasting about no flats in yesterday’s blog.

No such thing as a pleasant hill.


June 28 – Day 16: Pigeon Forge to Crossville, Tennessee: Hilly 100

Today we put it all out on the Road to Discovery – we had nothing left after the 102-mile ride and 6,000-foot climbing. We got lucky with the weather, but the mountain we crossed in the last 20 miles was really something else. Following the forecast, we were prepared for a rainy day that never came. It was overcast all day, but luckily no downpours. Pigeon Forge and Gatlinburg are neighboring cities – we left there nice and early. The first 50 miles were smooth sailing. As for the last 20 miles – well, let’s say it took everything we had to make it over into Crossville. The majority of our ride today we were on a bike route. Mostly that meant sharing the road with the motorists (some did not appreciate that much), but for part of Highway 70 we had our own designated cycling lane. What a difference that made. We talked about how nice that would be if we had that near home and discussed the efforts of “Granger Paths” and “Bike Michiana Coalition” who are trying to get that done. We had a very scenic ride today and stopped by a large dam for some photos – a propeller display caught our eye because it was the largest propeller we’d ever seen. Read more »

June 27 – Day 15: Bryson City, NC, to Pigeon Forge, TN: Up and Over the Smoky Mountains

Today was a challenge – a short day in terms of miles, but about 25 of them were up and over the mountains, in Great Smoky Mountains National Park. We left Bryson City very early, passed by the Cherokee Reservation, and climbed up the Smoky Mountains to more than 5,000 feet. It was a tough ride up because of the relentless incline, but the views were spectacular – from whitewater rapids to mountaintops and gaps.

Gorgeous Scenery

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June 26 – Day 14: Asheville to Bryson City, N.C.: Halfway There!

Today we added a new member to the support team – our daughter Ally, who flew to Asheville over the weekend to be with us. She has learned a lot about NPC, and because it affects children her age, she wanted to be a part of the trip. So we brought her down for the final two weeks. She is working with the support team to make sandwiches, do some photography and videography, help with the blog, and, of course, keep us motivated. In the photograph, Ally has adopted the Persevere t-shirt sent to us from Karen at the National Niemann-Pick Disease Foundation (www.nnpdf.org).

Ally in Persevere T-Shirt from NNPDF

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June 25 – Day 13: In Remembrance of Two Colleagues in the College of Science at Notre Dame

The Notre Dame family has suffered two very significant losses while we have been on the road. Professor Morris Pollard, one of the true Notre Dame legends in the Department of Biological sciences, and Professor Jianguo Cao, a distinguished mathematician who had been with us for 15 years, passed away within the last week. It is always hard to lose a colleague, and these great scholars and teachers will be sorely missed in their departments, in the college and across the University, as well as in their larger fields.

Professor Morris Pollard

Professor Morris Pollard was 95 years old and had been at Notre Dame for 50 years when he passed away on June 18. Morris was professor emeritus of biological sciences and director of our Lobund Laboratory. When he – a prominent Jewish researcher – came to Notre Dame – a Catholic university – he helped establish our community as a place where people of different backgrounds could join in the common purpose of serving humanity. In addition to directing medical research at Lobund, he published more than 300 scientific articles and developed a unique breed of germ-free “Lobund-Wistar” rats to study the mechanisms of disease. His research on virology and cancer led to bone marrow transplants to treat leukemia and sarcomas, and the American Cancer Society bestowed its Hope Award on him.

Professor Jinguo Cao

Professor Jianguo Cao, a native of China who came to us from Cornell in 1996, was only 51 years old when he passed away on June 23. His career was tragically brief, but remarkably productive. He published more than 30 research articles, authored a book on Riemannian geometry, and delivered more than 100 lectures. Jianguo was a world expert in his field, differential geometry, and often spoke at international conferences. He received a Changjiang Chair at Nanjing University in 2007. He was a visiting member of the Institute of Advanced Studies in Princeton, the Mathematical Sciences Research Institute in Berkeley, Max-Planck Institute for Mathematics in Leipzig, and Institut des Hautes Etudes Scientifiques in Paris, as well as a visiting professor at the University of Michigan and at Capital Normal University in Beijing. In the Department of Mathematics, he often served on departmental committees and in recent years ran the colloquium and short-term visitor programs.

Like any family, when we suffer loss, we all mourn – and we find strength in each other. We have been riding for nearly two weeks, with miles to go, to do our small part in the fight against NPC. We feel the support of the Notre Dame family that responded so strongly when this disease brought loss to the Parseghian family. We want the Pollard family and the Cao family to feel that same kind of solidarity from us and all of the Notre Dame community. Our sincere sympathy and condolences go out to the families, friends, and colleagues of Professor Morris Pollard and Professor Jianguo Cao.

June 24 – Day 12: Hickory to Asheville: Sunny Skies, Steep Slopes

As we left our hotel this morning, Carol, who works there, came out to send us off and wish us well. When we checked in the day before, she had come out to sign the van, take pictures, and of course get a t-shirt and hear all about our ride and the cause. Read more »

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. Read more »

June 22 – Day 10: Lynchburg, VA., to Winston-Salem, N.C.: Dog Days of Summer

Greg is Missing Indiana

Today we had a very challenging ride on rolling hills, punctuated by several encounters with dogs. The first one was very small and chased us down the road for quite a while, at a safe distance. The second one looked like a pit bull, and we were a bit concerned because he was missing one ear. When the third one showed up, Greg dropped his water bottle behind the bike to distract him – and when we went back for the bottle, the dog was guarding it. With the fourth and fifth dogs, we figured out that a squirt from the water bottle is most effective at discouraging them. It was enough to give even dog lovers like us some second thoughts. Read more »

June 21 – Day 9: Richmond to Lynchburg (Through Appomattox): Not Retreating

Today we followed the route of “Lee’s Retreat” from Richmond into Appomattox Court House. We packed a good amount of Civil War history into our day. Appomattox Court House is actually the name of the town, which used to be a county seat. We were able to go into the McClean house where Robert E. Lee surrendered to Ulysses S. Grant. It was fascinating to walk around there, and see a snapshot of how things were in 1865. Afterwards, on the road, we encountered some nice rolling hills, so our legs got a good workout. At the end of the day, the mountains came into view. I am happy they are still two days away. Read more »

June 20 – Day 8: Fredericksburg to Richmond: Cool and Wet, More NPC and ND Encounters

A Bit of a Wet Day

We left Fredericksburg today in the rain, and the weather stayed steady the entire way down to Richmond. We were soaked through and through, but the landscape was beautiful. We would have seen more if we had windshield wipers for our glasses, but I think we saw every shade of green along the road today, including Kelly green! We also saw more gophers watching as we passed and making those funny noises as though they are laughing out loud. We also had a stealth dog approach – the kind that make no noise and appear fast and furious out of nowhere. There must have been an invisible fence, because after that first lunge the dog seemed to lose interest and didn’t pursue us. It was enough to speed up the heart rate, anyway. We saw a store named “Pops,” which is our girls’ name for Greg, so we joked that he owns a store here in Virginia. Very few cars interrupted our tranquil surroundings until we entered Richmond, and by then we were close to our hotel. Tomorrow we are expecting a hot, sunny and humid ride – typical Southern weather. Read more »

June 19 – Day 7: Annapolis to Fredericksburg: Carrying the NPC Story to Strangers and Friends

Another Beautiful Day

We rode the first 40 miles today in a sprinkling rain that felt pleasant in the warm air. Then the sun came out for the rest of the day. Nearly a week into the ride, we had our first and second flat tires – both times it was Greg’s front tire. We figured the 50 flats we had last year should have been enough for two trips, but we’re still on a better pace this time around. We saw a real menagerie of wildlife today – turtles, bunnies, a fox, gophers, who seemed to be laughing at us as we passed, and, most impressive, a deer right next to us in the ditch! That was Greg’s closest encounter with a deer. Fortunately, he decided to jump back into the woods rather than into the road as we went by. That collision could have been worse than 50 flat tires! Read more »

June 18 – Day 6: Philadelphia to Annapolis: Clinical Science and Compassionate Healthcare at the NIH

Another excellent ride today – nice weather, warm temperatures and favorable winds adding up to a smooth first six days. We covered four states in one day – New Jersey, Pennsylvania, Delaware and Maryland – spanning a little bit of everything from ocean views to pine trees to corn fields to marshes, little villages and a nuclear power plant. We crossed the Chesapeake Bay Bridge – not the only one today. The first one we crossed was an enormous bridge over a swamp, the most climbing we had to do all day. Renate started singing:  “This is the bridge that never ends…and it goes on and on, my friends.”  (This might be one of those “You had to be there” stories.)  Last night in Philadelphia, we had our van parked on the road, and a parking policeman came over. When he heard the story about our ride, he gave us a blank ticket to put on our windshield for us to leave on overnight, since we were parked in front of Penn. Thank you, Mr. Parking Policeman!  Read more »

June 17 – Day 5: From the Big Apple to the City of Brotherly Love

After a strong early-morning thunderstorm in New York City, the riding today was phenomenal – smooth roads, nice weather, and warm temperatures. The scenery and neighborhoods through New Jersey were just wonderful. The first five days have been splendid – we are off to a great start!

Our first stop was at the University of Pennsylvania to visit the Vite Laboratory. Dr. Paula met us at the School of Veterinary Medicine, and two NPC families came – Sean and Amy with their children, Katie and Adam, and Brian and Kim with their children, David and Andrew. Adam and Andrew have Niemann-Pick Type C. Adam’s grandparents also came. The families had not met each other before, and we were very happy to get to know them. Adam and Andrew were so outgoing, friendly and kind, and it was wonderful to spend time with them. Read more »

June 16 – Day 4: Long Island: Laboratory, Hospitality and a Long Ride

ND Fans at Penn Station

Today was another great day of riding – perfect temperature, favorable wind, sunny and very pleasant overall. Last night, waiting at Penn Station for our train out of Manhattan, we ran into two Irish fans. Steve saw our Notre Dame shirts and told us that his son Michael will be a freshman at Notre Dame this fall. He’s interested in medicine, so he’ll be with us in the College of Science. Joe, a Notre Dame alum, came over to tell us about the Notre Dame event in New York City where he was happy to hear Athletic Director Jack Swarbrick speak and to meet Dean Nell Newton, the Dean of the Law School. We always seem to find Irish fans wherever we go. Read more »

June 15 – Day 3: Mystic, Connecticut, to Long Island, New York: Energized by a Meeting with a Niemann-Pick Family and the Memory of So Many More

It was a great day to ride – sunny, perfect temperature and favorable wind the entire way. Long Island was especially beautiful today – a cyclist’s dream ride! As soon as we left the ferry, we saw a “Welcome to New York” sign – our third state-line crossing in three days. Not bad.

Our Third State on Our Third Day!

When we stopped the van to rehydrate on Long Island, a woman came out of a nearby house to see what was going on. We explained the ride and our mission, and she ran into the house and called her daughter, who had recently graduated from Holy Cross, to see the van. We talk to everyone who will listen about Niemann-Pick and our fight at Notre Dame to find a cure or therapy. The woman took pictures and sent them to the local papers – what a great gesture from a kind stranger.
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June 14 – Day 2: Connecticut Parents Committed to the Cure

We had another great biking day – chilly weather, but the rain stayed away and the wind was at our backs. Rhode Island seemed hilly – I guess that’s what happens when you live in Indiana! But they were gentle hills, the kind that started back down as soon as our legs started trembling. Thank you, Rhode Island, for breaking us in so we’ll be ready to get through the Smokies in a few weeks. Read more »

June 13 – Day 1: Beantown to Providence, RI: What a Day!

We had the perfect day today! The weather was a bit chilly at first, but then it turned cool and sunny, and we had a favorable wind most of the day. The start was very special as we departed from Ara Parseghian’s home in the Boston area. Ara is the grandson of Coach Ara Parseghian, one of Notre Dame’s most successful football coaches; the son of Cindy and Mike Parseghian; and the brother of Michael, Marcia and Christa, whose diagnosis with NPC led to the creation of the Ara Parseghian Medical Research Foundation and who still inspire our efforts. Getting to know Ara and his wife Cicely was such a pleasure, and it was very special to have Ara bike with us on this first leg. He’s a strong biker and runner – he finished the Boston Marathon this year. Wow, what an accomplishment! What a privilege to have him as part of our ride. We left Ara and Cicely’s home around 9 a.m. and arrived in Providence around 1 p.m. Apart from a detour in Pawtucket, Rhode Island, the day was flawless. Thank you, Ara, for riding with us – we really enjoyed being with you.

Ara Parseghian, grandson of former head coach Ara Parseghian, rode with us for the start of our ride in Boston.

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A World of Research

A World of Research

 Doctors in Scotland told Jim Green that his family was only one of three in the world who had Niemann-Pick Type C when they delivered the diagnosis in 1989. He and his wife Susan have three children, and two of them were diagnosed. Now Jim, who spoke at our recent Michael, Marcia, and Christa Parseghian Scientific Conference, is one of the leaders of the fight against the disease. He’s been chairman of the Niemann-Pick Disease Group in the United Kingdom for 11 years.

 “If we’d had this meeting in 1989, I don’t think any of you would have been here,” Jim told the conference “What an amazing change. This meeting represents something absolutely phenomenal in terms of development. We have so much to talk about now that we didn’t have in those early days.”

 About a year ago, he was part of the organization of the International Niemann-Pick Disease Alliance with Argentina Canada, France, Germany, Holland, Italy, Spain, the United Kingdom and the United States. Since then, Switzerland, Japan, Brazil, Norway, Australia and China have become involved.

 Within the global effort, Jim said, the Ara Parseghian Medical Research Foundation stands out. “This is a shining light that goes out around the world,” he said. “There was always an emphasis on collaboration. They combined that with expertise and skill to produce phenomenal results.”

 Jim also reminds us that huge progress isn’t enough until we reach the cure.

“For families it is never fast enough,” he said. “We must never forget the urgency. “That’s our role, I think, as families, to keep that urgency up there on the agenda. I know the progress that’s being made, and I know we’re going to get there.”

Niemann-Pick Type C Conference Comes to Notre Dame

The Science Team

Next to the children and families who inspire us all, I find myself energized in the fight against NP-C by the dedication and determination of the researchers that are on

Ara Parseghian opened the conference on Thursday afternoon.

the front lines for us. The Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research was an amazing showcase of the progress we’ve made. I am thrilled that it’s going to be a permanent part of our life at Notre Dame.

The three days were packed with half-hour presentations from scientists from around the world – Australia, Germany, Switzerland, Brazil, France and Canada – as well as leading U.S. universities such as Purdue, Rutgers, Stanford, UT-Southwestern, California-San Diego, Rush, Columbia, Cornell, Washington and Case Western Reserve. Of course, I am especially proud of our strong Notre Dame presence. Kevin Vaughan, Holly Goodson, Rich Taylor and Crislyn D’Souza-Schorey chaired sessions. Olaf Wiest, who holds a summer teaching appointment in China, was video-fed in from Hong Kong to open Friday’s session, and Kevin Vaughan and Kasturi Haldar gave presentations as well.

The scientists are leaving no stone unturned in their search for a cure. They’re looking at drugs already approved for other diseases, at new compounds that might hold promise against NP-C and at combinations of drugs. Sessions at the conference covered molecular biology, drug discovery, cell biology, neurology, clinical studies and cyclodextrin, a compound that has been shown to help transport cholesterol out of lysosomes in NP-C patients.

Ara Parseghian briefly spoke to NP-C researchers and family members at the beginning of the conference.

One of the participants pointed out that the Ara Parseghian Medical Research Foundation has made so much progress because of its rigorous approach to science and evidence-based decisions. It’s important to keep that game plan, he said, now that we’re driving for the touchdown deep in the opponent’s territory. We’re all looking forward to the conference at which we get to celebrate that victory – the cure.

(Sunday, June 12) Getting Ready in Boston

Well, the day before we set off was a cold and rainy one in Boston.  We woke up after a 14-hour drive from South Bend, refreshed and ready to go on the eve of the beginning of the ride.  George from Notre Dame Development set us up with many nice meeting throughout the day.  We had a brunch with one of my advisory council members, Rich, who works out of Boston. His interest in the ride was invigorating. Then, right after breakfast, it was off to lunch with Paula and Matt.  Matt is on the Engineering Advisory Council.  We had lunch at Legal Sea Foods on the water – a beautiful view on a chilly day. We talked in depth about the ride and the Parseghian family, then we turned to football. I am predicting an undefeated 12-0 season – Matt and George were nearly as optimistic.  

We then went on to the home of Ara Parseghian, son of Cindy and Mike Parseghian and grandson of Coach Parseghian. Ara lives in Boston, where his wife Cecily is a lawyer and he is a fourth-year medical student at Tufts University.  They have a great home.  We packed up the van in time for our interview with Kelley Tuthill, the anchor at ABC Boston. Kelley is a Notre Dame alumna and breast cancer survivor.  She is terrific – we had read all about her fight against cancer and how she did it with the viewers. She is an inspiration to us all and one of our many fantastic alumni.  Kelley interviewed us and got some pictures of the green van and, of course, some video of us riding.  

Then it was time for dinner at Paul and Susan’s house in Concord. Paul is on my advisory council, and their daughter Victoria is coming to Notre Dame this fall to study science-business. Wow!  She is so excited and very enthusiastic about ND – she has the ND spirit, and I must say she is just perfect for Notre Dame.  Leo and his wife Janice were there, and we talked about the ride and the Parseghians’ fight against Niemann-Pick.  Ara and Cecily came for dinner,  and we had a great time together. Read more »

Greg biking in the mountains

Renate and I are looking forward to hitting the open road and talking with researchers and families.

Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research

We are looking forward to hosting the national NPC conference in Jordan Hall beginning this Thursday, June 9 through Saturday, June 11 in the Jordan Hall of Science.  About 80 NPC researchers and 10 parents will be attending. The public is invited to the research presenations. 

View conference information.

(Thursday, June 2) Gearing up for the Road to Discovery

Notre Dame Cycling Team

The Notre Dame Cycling Team raised money for NPC research at the Midwest Collegiate Cycling Conference in March.

The 2,300-mile Desert to Dome bike trip last summer from Tucson to Notre Dame was so inspiring that Renate and I decided to ride again. This time, we’re bringing awareness of Niemann-Pick disease, the devastating toll on families and the determination to defeat it through research,  to another corner of the country. We’ll be cycling from Boston to Dallas via New York, Philadelphia, Washington, Richmond and Nashville. On this “Road to Discovery,” we’ll meet families, researchers, doctors and Notre Dame friends and develop a video to help spread the word about research to find a cure or treatment for NPC.

 Desert to Dome, dramatizing the strengthened partnership between Notre Dame and the Ara Parseghian Medical Research Foundation, was an amazing experience. Working with the Parseghians, who have transformed their personal loss into hope for thousands, is a great privilege. Cindy and Mike’s son, Ara Parseghian, who is a medical student in Boston, will join us this time for the early leg of the ride – the best sendoff I can imagine.

 The support of the Notre Dame family will also be with us as we take this trip. President John Jenkins and Provost Tom Burish, as well as my colleagues and staff and the alumni network, are always a great encouragement. We like to think the ride is another piece of the great Notre Dame commitment to healing and serving in the world, like the work of our students in Haiti and Uganda and at the Center for the Homeless and Hospice in South Bend and so many other places.

 I was so moved after last year’s ride when Notre Dame students Michael Dean and Joe Magro came to me to share their passion for this cause and their determination to raise awareness. Michael ran the Boston Marathon and raised money for the Foundation. Joe and the Notre Dame biking team dedicated their race to raising money for NPC.  What incredible students we have at Notre Dame! Their individual and collective efforts, their unity of purpose, their passion and compassion for humanity show the world the true fighting spirit of our University.

 This road goes through some bigger cities and some higher mountains than we encountered last year. We hope you’ll join us here, day by day, and spread the word so the cure will come soon to end the suffering of these precious children and their families.

 Thanks so much for being a part of this life-changing mission.