Day 18: Holdrege, NE to McCook, NE

Today was a perfect day to ride! It was the easiest day by far, complete with a tailwind instead of those headwinds and crosswinds I’ve been battling for some time.  It’s really too bad my tri-bike frame broke yesterday (I am still waiting for a solution with the bike store in town); it would have been a perfect day to ride that frame.  We did some retrofitting on the road with the other frame.  Those Zipp tires from SRAM that Jeff donated are something else!  I can really zoom along.

Today felt like we started in the Midwest because we were still in the middle of a lot of corn fields near Holdrege.  As we traveled to McCook, the landscape transformed into big rolling hills with beautiful wheat fields and lots and lots of cattle.  I took a break from riding to play in the wheat fields for a bit.  McCook, Nebraska is really a neat little town.

Today was also the first day of the Michael, Marcia and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research Conference at Notre Dame.  The conference kicked off with lunch in the Jordan Hall Galleria.  More than 100 participants represent 31 institutions and five foundations at the conference. The gathering includes researchers, NPC families, and representatives of pharmaceutical companies from eight countries – the United States, Canada, Brazil, Germany, the Netherlands, Switzerland, Australia, and France. There are 17 NPC family members and three patients: Everett, an adorable 10-month-old; Tammy, whose diagnosis has been elusive, but who may have adult-onset NPC; and 12-year-old Lili, who came with her mom and dad from Germany.

I beamed in via Skype to welcome everybody and to thank our bike ride sponsor, the Notre Dame Federal Credit Union.  The credit union has been a great partner.  Both Diedre and Jon from NDFCU were there today, and Diedre told the conference participants about innovative ways the credit union is helping raise money for NPC.

The conference opened with a keynote address by Dr. Marc Patterson, a professor of child and adolescent neurology at the Mayo Clinic and a recognized expert in the field of NPC. Dr. Patterson provided a comprehensive overview of the evolution of NPC research from the first identification of the disease in 1949 to the present day. He ended by suggesting the metaphor of a journey to describe the search for a cure, which is still unfinished. He also called for a greater degree of precision in engineering diagnostic methods and expanding efforts at education and awareness about NPC.

Dr. Marc Patterson of the Mayo Clinic

Following Dr. Patterson’s talk, there was a session on molecular and cellular biology, in which presenters discussed intracellular protein-protein interactions involved in cholesterol trafficking as well as the pros and cons of using induced pluripotent cells to build disease models as an alternative to animal models.  The evening ended with dinner and open-format discussions for NPC families and for researchers.

2 Comments so far

  1.    Bob Williams on June 8th, 2012


    Sounds like the wind has made a little challange for your trip but it does sound like you are having some fun.

    Les just said, ” I am glad it is Greg and not me riding”.

    We’ll have to have a beer or two when you get back.


  2.    Anneke de Bont on June 8th, 2012

    Great Greg to see how the research in the Niemann pick type c is growing and getting more and more attention. Wish you a good ride and lots of succes Anneke