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! 

Darille, Mark, and Dillon; In the Background: Dr. Porter, Renate, Greg, Dillon's Grandma, and Nicole

Today, we visited Dr. Denny Porter, who is performing a Niemann-Pick Type C clinical study, at the National Institutes of Health (NIH) in Bethesda, Maryland. Darille and Mark joined us there with their son Dillon, who has NPC, along with Dillon’s grandma. She literally gave us the shirt off her back – with Dillon’s picture on it. In the words of his aunt, “His smile could light up a thousand ships,” and we certainly agree with that.  Dillon is so compassionate, outgoing and loving, with a strong compassion for others.  He even wakes up with a smile. He loves baseball – both playing and watching the Orioles. His favorite players are Nick Johnson and Brian Roberts. He threw a lot of fastballs at Greg (the catcher), after consulting with his pitching coach (Dr. Porter) while the umpire (his dad) was making the calls. Dillon can throw some heat. He loves the attention and is a “rock star” at school, giving high-fives in the hallways. We sure had our fair share of high-fives today. Dillon is also an Irish fan and has watched the movie “Rudy” more than anyone we know. After signing the van and taking pictures with his new Road to Discovery t-shirt, he presented us with a green Dillon’s Army Wristband imprinted with www.dillonsfight.org. Meeting Darille and Mark, such amazing parents, inspired us anew. It is the energy that we gain from these children and families that carries us on to our next stop and all the way to Dallas, so we may tell their story all along the way and beyond. 

Dillon Pitching

Dillon and Dr. Porter Discussing the Next Pitch

Dr. Porter, Mark, Greg, and Renate, Dillon's Grandma, Nicole, Dillon, and Darille

Dr. Porter is conducting a clinical study with Niemann-Pick Type C children that started six years ago. He has a terrific nurse practitioner, Nicole, who coordinates the study.  It was very clear to us why the children love coming to the NIH – they look forward to their visits with Dr. Porter and Nicole.  It was great to observe that relationship with Dillon.  When he walked into the NIH, he ran up to Nicole to hug her and tell her his stories.  At the time the study began, there were no outcome measurements associated with tracking a drug or therapy. Dr. Porter’s National History Trial is looking for biomarkers that can ultimately help track the effectiveness of drugs and therapies, as well as a more rapid way to diagnose Niemann-Pick Type C. To date, there are over 50 patients enrolled in his NIH study. Dr. Porter explained to us the science behind the disease and the various medicinal approaches used today in caring for NPC patients. We were so impressed by the facilities and labs at the NIH, but even more so by the dedication of Dr. Porter and Nicole.  Watching their interaction with Dillon, it was clear that we were seeing so much more than clinical science – this is the human and compassionate side of healthcare. Dr. Porter gave us a big surprise when he presented us with two brightly-colored (our favorite, as you may have noticed) National Niemann-Pick Disease Foundation’s PERSEVERE t-shirts, which Karen from the foundation had provided.

Dillon by the Van

Dillon Showing off His New Shirt

Greg and Renate with Dillon

In the evening, we met with Notre Dame alumnus Dr. Mark and his wife Susan for a fantastic dinner in Vienna, Virginia. We talked about the ride, NPC, Notre Dame, the ESTEEM Program, and educational measurements and outcomes.  Thank you, Mark and Susan, for such a wonderful evening.

Mark and Susan, ND and SMC Alumni, and Parents of ND Students

6 Comments so far

  1.    Greg Feldman on June 20th, 2011

    Greg….those look like aero bars on your bike!? But none for Renate??

  2.    Geoffrey, Tori, and Ian on June 20th, 2011

    Hi Dean Crawford! We are rooting for you back at ND! Thank you for taking the time to take this trip to represent all the researchers and families working toward a cure for NPC. Stay safe! –Geoffrey, Tori, and Ian

  3.    Bart de Bont on June 20th, 2011

    Hi Greg and Renata,
    What an amazing undertaking – again! All the best on your ride!
    Bart and Teri

  4.    Jill Mark on June 20th, 2011

    Hi Greg and biking team,
    I am reading your posts with fascination and admiration for what you are accomplishing. Am sending this quote… Whenever I see an adult on a bicycle, I have hope for the human race. ~ H.G. Wells
    You and your team are definitely giving a LOT of people, including children with the disease you are fund-raising for, HOPE for a brighter tomorrow! Ride On!!! ;-D

  5.    Linda D. on June 21st, 2011

    As a close friend of Dillon’s “Grandma” and true admirer of Dillon and his family, way to go. Thank you for riding for such a wonderful cause. I am always moved by the depth of compassion I see in my fellow humans. Keep on truckin’ (or bikin’ in this case).

  6.    Sandra N on June 22nd, 2011

    Thank you all for every mile you push through….your dedication to support NPD is awesome!!