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.

Two NPC Families Meet

The boys hit it off right away, and it was touching how Andrew took to Adam. When Andrew asked for a second College of Science bag, I assumed he wanted a spare one, but he was making sure that his new friend, Adam, had one, so that they could both have something for carrying their new Road to Discovery t-shirts. We gave the boys Notre Dame footballs, and they immediately started passing to each other. Adam’s smile grows even more contagious when he’s playing. Andrew’s mom had told us earlier that he’s outgoing and helpful and never has a mean word to say to anyone, and this afternoon we saw this for ourselves. Both boys are sports enthusiasts. Adam loves to play soccer and football, and Andrew, who had been a pitcher, loves to watch baseball. They both root for the Phillies. These boys have so much spirit and positive attitude – we were very impressed.

Adam and David Playing Football

Greg, Adam, Andrew, and Renate

While Renate spent time with the families, Dr. Paula took me on a tour of the genetics laboratories. I met with the Niemann-Pick Type C researchers – Jessica, Maria, Su, Tracey, Therese, and others. They are doing amazing work on cyclodextrin to stop the neurological progression of NPC. The results are very promising in their animal model. The group explained their staining and microscopy studies of tissue sections and told me about preparing the cyclodextrin injections. They were very passionate about their research, deeply focused on the mission of their work, and truly excited to be part of such an important project. They also enjoyed the chance to meet Adam and Andrew. I then had the opportunity to meet with Professor Joan Hendricks, Dean of the School of Veterinary Medicine at Penn. It is great to have such talented researchers working on Niemann-Pick Type C at Penn and such strong leadership supporting their work on this rare disease. The scientists signed the van, so we can carry the memories of their warm hospitality and their exciting research with us across the country.

Renate took the two families to the van, which Sean had seen at the NPC conference. He was excited to show it to Adam. Everyone was impressed by the bright vehicle and the numerous autographs, inspiring quotes and messages that are starting to cover it. Already, it takes some time to read so much writing, and most people don’t want to miss anything. The families added their signatures. Adam wrote “Go Irish” – how appropriate and much appreciated! Adam gave us a coin from Lourdes, France, a pilgrimage site for Roman Catholics and a place of miraculous healings, and he made sure that Andrew got one, too. Thank you, Adam; that was so kind of you. We will carry it with us on our trip and keep it as a reminder of our meeting with you in Philly.

Andrew Signing the Van

Adam Writing "Go Irish!"

The perseverance, love and positive attitude that we see in the children and their families always inspires us. Thank you to both families for coming out to meet us. Your energy keeps us going, and we will carry your inspiration and your stories to Dallas and beyond. We wish everyone reading this blog would have the opportunity to meet these families and their children; they are so uplifting, full of hope and spirit. We try to put our experiences with them into words, but words alone cannot convey how amazing these people are. We hope our daily reflections on our meetings, as well as the pictures, convey their strength to you.

Dr. Bill, Greg, Lauren, and Renate

After our visit at Penn, we had a nice dinner with Dr. Bill, a Science Advisory Council member, and Lauren (Class of ’11), who now plays professional soccer for the Philadelphia Independence. Dr. Bill just wrote a book called Windfall Nights, a story about coming of age and redemption, and he gave copies to us and Lauren. We had a great time talking about NPC, the ride, soccer and MCATs, as well as drug discovery and how to spin companies out of a university. It was a wonderful evening, and Dr. Bill and Lauren signed the van before we left.

Dr. Bill, Science Advisory Council Member, Signing the Van

Lauren, Class of '11 Science-Business Major Signing the Van



3 Comments so far

  1.    Karen Quandt on June 18th, 2011

    Hi Greg and Renate,
    Love the story about Adam and Andrew! I want to go see Dr. Vite’s lab too and I will go after the NNPDF conference in August!Persevere!

  2.    Brian and Kim Coppola on June 18th, 2011

    Our experience yesterday was such a blessing. It was an honor to meet two wonderful people (and crew) giving of thier time and energy to fight for our son Andrew and future generations. We are in awe of the potential we all have both individually and collectively. Greg and Renate are an inspiration to all. Thanks again. Remember to be safe on the remainder of your journey. God Bless to all.

    Forever a friend,
    Brian, Kim, Andrew, and David Coppola

  3.    Sabine Fornfeist on June 19th, 2011

    Dear Greg and Renate,
    Thank you so much again for hosting us during your conference! And also thank you for this big effort you are undertaking just now – you are also bringing so much hope to European families. We are reporting to the German parent organisation about all your endeavours!
    Lots of Love
    Sabine and Michael