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.

We lived in Rhode Island for twelve years, so the ride for the past couple of days has brought back a lot of memories. One of the less pleasant parts was the re-introduction to a common feature of the state: the pothole. The roads through Rhode Island were terrible, full of potholes, cracks, stones, gravel and sand – you notice that sort of thing more on a bicycle, – but once we crossed into Connecticut, it was smooth sailing. All in all, we had a wonderful biking day.

Welcome Sign

We're in Connecticut!

We also had a really wonderful day with families. Judy met us at our hotel in Mystic. Like most people, she seemed impressed by the brightness of the van – the matching vehicle and bike gear attract a lot of attention. Judy shared her stories and a picture album of Bryanna with us. In all the photos, Bryanna was smiling, being silly and living life to the fullest. We learned about their travels, about Bryanna’s creativity and about her love of ballet, music and being with friends. Judy had some wise advice for other families: “Keep on living.” Little things like vacations and time spent with family and friends are so precious. We feel very honored to hear about these precious children and their love for life, and they inspire us so much!

Greg and Renate with Judy

Judy Signing the Van

After meeting with Judy, we drove to the home of Phil and Andrea and had the opportunity to meet their children – Andrew and Dana, both fighting NPC, and their son Philip. A large banner welcomed us when we pulled up to their house. It was very touching and much appreciated, as were the delicious appetizers they had waiting. We learned about the start of Dana’s Angels Research Trust, or DART (www.danasangels.org; and their amazing fundraising and awareness efforts. The support from their local community, especially from classmates and friends of their children, is phenomenal.

A Warm Welcome

Dana’s beautiful face and personality are such a pull for the community, and the strength her family shows is inspiring. Dana, I am wearing a replica of the necklace that your friends created as a fundraiser for you, symbolically showing a circle of friends. It will be with me all along the road to Dallas.

Andrew told us about his amazing athletic feats in baseball and karate and about his recent interception in flag football. He saved the play in a way that would make Coach Ara proud. We are so touched and inspired by what Andrew wrote on the van: “Keep doing what you do best… helping.” We were also able to meet family friends very active in DART as well as some ND alums who are close friends of Cindy and Mike.

We continue to be so inspired by the families who have children fighting NPC or who have lost children to NPC. Their strength and perseverance are incredible. The families who have lost their children continue to support other NPC families and to be actively involved in the fight to find a cure so no other family will have to go through what they suffered. We’ve always seen this so clearly in Mike and Cindy, and the families we met in the last few days share that dedication and generosity.

In Front of the Van with John, Jackson, and Nick

In the evening, we visited John and his two sons, Jackson and Nick. Nick is a science business student at ND, and Jackson, a rising high school junior, is very interested in physics, so both are right up our alley. We had a lovely time, with plenty of carb-loading to get us going tomorrow on our ride towards NYC. John, an ND alum and medicinal chemist, told us some fascinating stories about the drug discovery process and clinical trials. It was at a stimulating conclusion to a very inspiring day.

7 Comments so far

  1.    Annette Ruth on June 15th, 2011

    It seems like both of you are off to another great start! You bring real hope and inspiration to so many people, and I pray that this trip continues to be safe and successful for you! I am currently working with CRS in Haiti, and the researchers here from Notre Dame all wish you the very best!

    Bòn chans!

  2.    Stephanie S on June 15th, 2011

    Way to go Dean Crawford and Renate! As a current science student at ND, I had the opportunity to take Dr.Haldar’s class focused on NPC research. The disease is now so close to my heart, and you guys are truly an inspiration to the NPC community! Keep up the good work. Can’t wait til you get to New Jersey!

  3.    Ian G on June 15th, 2011

    Good luck Dean Crawford on your journey for a great cause. I’m an SCPP major from RI and I’m sorry to hear about the hills you encountered!

  4.    Peggy S on June 15th, 2011

    Best of luck to Greg and Renate! I just met them this morning, here on Love Lane in Mattituck, NY. I sent the photos and information on to our local papers in hope of more awareness in the fight against this disease! My grandfather attended Notre Dame and my daughter noticed your bright green ND van outside and you certainly aroused my curiosity! Prayers for good weather, no flat tires, and much success drawing attention and support to this worthy cause!

  5.    Kathy Taylor on June 15th, 2011

    It must mean a lot to the NPC families to meet people comitted to finding a cure. And I know that meeting those families keeps your legs turning those wheels. We are all proud of you!

  6.    Joey Fallon on June 16th, 2011

    Good luck Greg!

  7.    Sheila O'Brien on June 16th, 2011

    Another road trip? You two are an inspiration!

    Thanks for all you do to remind us to help in this fight.

    Safe journey!

    Sheila O’Brien
    ND ’77 ’80L