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.

Greg and Renate in the Big Apple

After settling into our hotel in Great Neck, NY, just outside the city, we took a train into Manhattan to visit an NPC family. Stephen and Kate invited us to their home to meet Jane and Anna. Anna, who is 16 and has Niemann-Pick Type C, is a creative and inquisitive young lady, and she seemed to enjoy having company. Stephen talked about Anna’s love for music and people-watching in the park. Kate told us about swimming with Anna and motoring her around the pool with a noodle under each arm. Kate and Stephen invited us to stay for some fantastic New York pizza – Lombardi’s, clearly a favorite of Anna and Jane. Thank you, Kate and Stephen, for your hospitality and for sharing with us your stories of Anna. We wish you could have signed our van, but even though we can ride our bikes across the country, driving a van into NYC is beyond our abilities. Since we could not show it to you in its corporeal form, here is a picture:

I can’t imagine a more inspiring way to spend my summer than meeting with researchers, physicians, healthcare professionals and parents of NPC children. After meeting so many families on our first few days of our trip, I thought about the NPC families I met at the 2011 Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research (http://niemannpick.nd.edu/conference) last week at Notre Dame. Their stories, so fresh in our minds, will keep us going all the way from Boston to Dallas. Let me tell you about those who attended the conference this year so that you can be inspired, too.

Sean, from Pennsylvania, has a son named Adam with NPC. I’m wearing the wristband and a “BELIEVE” necklace that he gave me during the visit. Sean and his wife Amy started a foundation, Race for Adam (www.raceforadam.org), in 2005 to help support research. Sean’s dad Al, who was with him, is a big Notre Dame fan, so I got to take him around campus and show him all the history and tradition, especially the exhibits in the Joyce Center about our athletes’ accomplishments.

Karen and Gene from Wisconsin have a son, Ty, who was diagnosed with NPC in 2005 when he was 8 years old. Karen is chair of the National Niemann-Pick Disease Foundation board (www.nnpdf.org), whose rainbow logo was the favorite art of Tommy, a child with NPC who died in 1995. She gave us wristbands that say “Persevere,” which will be a great reminder as we wear them on the ride.

Renata and Roberto from Brazil brought their two lovely girls, Natalia and Marcela, and I had the privilege of showing them around the campus. We spent some time at the Grotto lighting candles, and they sat and read the plaques on the bench at the grotto dedicated to Michael, Marcia, and Christa Parseghian. The girls are on cyclodextrin therapy and are doing very well – their physician from Brazil gave a very promising report on their progress at the conference. The story of their determination in this fight was a true inspiration to us all.

Michael and Sabine came from Germany – their family and friends helped pay for them to attend the conference. They enjoyed meeting the researchers and hearing about their progress, and they loved the company of so many other NPC parents. There is definitely strength in numbers. They have started a group in Germany to enlist more people in the fight against this disease.

Jim came from the United Kingdom and his wife Susan have been involved in the NPC community for more than 20 years. Their sons – Roy, who is confined to a wheelchair, and Murray, who passed away several years ago – were diagnosed when very little was known about the disease. Jim leads the Niemann-Pick Disease Group (www.niemannpick.org.uk) in the United Kingdom. He gave a very powerful and touching presentation during the parents’ discussion session. Bill, the research coordinator and secretary of this organization, had a daughter Caroline, who succumbed to NPC a few years ago. He was also at the conference.

Trent and Julie from Indiana have three NPC children – Riley and Keaton, who continue the fight, and Braden, who passed away at the age of 10 in 2006. Trent also gave a very powerful and inspiring presentation at the conference; he talked about Braden and about Riley and Keaton’s daily struggles, which they meet with courage and a strong spirit. Trent and Julie have been very active in the fight against NPC. They established a foundation, Breakthru (www.breakthrufund.org), within the framework of the Ara Parseghian Medical Research Foundation. Their oldest child, Chandler, who is now in college, is active in directing the fund and fighting for the NPC cause.

Phil from Connecticut, has four children, two of whom have with NPC. He was interviewed by one of the local news stations during the conference. His dedication to raising awareness and supporting the scientific research against NPC is really inspiring. We got to see Phil and Andrea and their children, Dana, Andre and Philip, on our ride through New London on Tuesday. Phil and Andrea started DART, Dana’s Angels Research Trust (www.danasangels.org) [see Day 2 Blog for more on DART].

Angela, whose son Isaiah has NPC, came from Ohio with her sister Ruby to support her. Jonathan, whose young son has NPC, came from California.

At the conference, Cindy Parseghian gave each family a Notre Dame football signed by Coach Ara Parseghian as a memento of the first NPC conference at Notre Dame. The football is a thank-you for their passion and commitment to finding a cure, and a reminder of Coach Parseghian’s encouraging football analogy: “We started off on our own 1 yard line in 1994, not knowing much about this disease. Today we are in scoring position, and we’ll cross the goal line in finding a therapy or cure.” Coach, you are so inspiring and bring so much hope to the families. You inspire all of us to do whatever we can to defeat this disease – thank you!

What the families gave us is even greater, and not just the wristbands we wear every day – the blue “A Goal for Life” from Cindy and Mike and the Ara Parseghian Medical Research Foundation, the red “Race for Adam” from Sean and the Race for Adam Foundation, the light blue “Persevere” from Karen and Gene and the National Niemann-Pick Disease Foundation. The children have always been our inspiration in this fight, and now we have more names and faces for “the children” – Ty and Riley and Keaton and Braden and Adam and Natalia and Marcela and Caroline and Roy and Murray and Isaiah and Joshua and Dana and Andrew and Scott and Graham and Erin and Anna and Michael and Marcia and Christa, and many others.

I am so fortunate to have met these wonderful families. They are our partners, our friends, and their hope, their faith and their dreams for their children keep us inspired and motivated , at the University of Notre Dame, in the College of Science, and on this Road to Discovery.

1 Comment so far

  1.    Peggy S on June 16th, 2011

    Greg and Renate, an article was posted on the North Fork Patch online blog regarding your cross-country venture and your stop in Mattituck, Long Island, NY! It was a pleasure to meet you and I wish you the best of luck with the rest of the trip! Here’s the link: