The Ride for Rare Diseases 17th Anniversary 

On June 24, 2009 our group of 14 people set out from Pittsburgh on our bikes for a six-day,  325-mile ride to Washington, D.C.  Our goal was to raise awareness of rare diseases such as vasculitis.  Here is a blog of that adventure.  

1. Point State Park Launch in Pittsburgh

The End: Credit Roll

Every good adventure story has to have an ending. Here is ours---the cast of characters in the VF Power Pedal Ride. I think the quote is especially relevant to our event.

This will be the last posting for this blog. It's time to move on, get back to reality, and possibly return to another bike adventure for another day.

Things We Learned Along the Way

Wrapping things up with some final thoughts on our ride:

• Yes, you can have "trail mirages". Around mile 58 of a 60 mile day it's possible to think you see someone hundreds of yards ahead only to discover it was light bouncing off of leaves. It didn't happen often, but I once I yelled out to a shrub not to wait for me and keep going.
  
• The most interesting sensation was riding through one of the long tunnels. About a quarter of the way through you find yourself in total darkness moving rapidly toward a distant pinpoint of light. For a few moments you get this odd feeling of weightlessness, or levitating. Very cool, but disconcerting too. Enjoy the head trip, but keep your wits about you. Bad things can happen in dark tunnels.
  
• Cell phone coverage was spotty. I found loss of coverage mainly around Ohiopyle, Meyersdale, and sections of the canal path. Some people had a signal most of the time; others did not. The walkie-talkies worked most of the time but remember to pack lots and lots of extra batteries.
  
• We learned a lot about where to stay and where not to stay overnight. There are two places I would discourage you from staying and if you want to know where and why contact me directly. Overall lodging was good. The best advice is to stay in known hotel chains such as Super 8, Holiday Inn, Red Roof, etc.
  
• Eating out? Check out Ed's Diner next to the Melody Motel in Connellsville. The garbage breakfast was my best one of the trip. Tons of protein for the day in this mishmash dish of eggs, sausage, and cheese.
  
• When in Meyersdale be sure to check out the train set up near the trail head. It's a nice reproduction of the surrounding area with a few trains in action. You can see miniature reproductions of bridges and buildings from that area.
  
• Don't race through Great Falls if you can help it. Stop and take in the main attraction. You'll be glad you took the time to see these spectacular Falls.
  

Arrival

We finally arrived.

Abbey Presents Document

Abbey Doyle, the youngest member of our biking team, presents a representative from Sen. Zack Space's Office with a copy of " A Call to Action".

By the way, Abbey deserves special credit for rolling with plans as they sometimes changed on a dime. It can't be easy for a 14 year-old to be riding with a group of mostly middle-age people, but she did fine.

She never complained or whined or whimpered. Abbey has the right stuff!

Heather Meeting Health Aide

The VF Power Pedal thanks all of the representatives who came to meet us at the park. We know they will put the document into the hands of the legislators.

Meeting Health Aide

Joyce, Heather and I meeting with the health aide from Sen. Sherrod Brown's office.

Sharon and John

This is John and Sharon Capp.

They joined us later on Saturday somewhere outside of Cumberland.

Thanks to them we didn't have to rent a truck as they supported us with a third SAG vehicle.

Glad they were along for the ride.

Riding into D.C.

How thirteen of us managed to ride through the middle of D.C. at rush hour without incident is a miracle.

I used to say that I wouldn't ride in Downtown Pittsburgh, but that concern has evaporated after a six mile ride through D.C. streets.

Meeting NIH Staff

Thank you to Steve Groft and other staff members of the NIH Office of Rare Diseases Research for meeting us at the ride's end. Here we are presenting Steve with a copy of our document.

The End

And this is where it ended. At 3:30 on Monday we rode into the park area greeted by Steve Groft and other members of the NIH Office of Rare Disease Research and the National Organization of Rare Diseases.

Other rare disease groups represented

Since this ride was about all rare diseases we made a point to wear the tee shirts given to us by the various groups. Also, we had a few opportunities to hand out brochures/literature from the CPAG groups that participated.

Morning Directons

Every morning we had a huddle with bikers and drivers to make sure we were all on the same page.

Thanks again to Don who was our logistics coordinator. He did a great job creating detailed maps and making sure everyone knew the next stop.

I imagine somone is getting paid a nice sum of money to do this task.

Good job, Don!!

Great Falls

Great Falls. Don't sail through here on your bike.

Stop and walk out onto the bridge overlooking these falls.

Beautiful!

Waterfall Surprise

Sometimes it pays to just stop riding.
Rest.
Look around.
Make sure something interesting isn't flying by as you race down the route.

This was a waterfall tucked back behind some trees.

I would love to go back on this route on a new timetable. A more relaxed schedule that would allow time off the bike to venture to some of the places just out of sight of the main trail.

If anyone from National Geographic is reading this blog, please contact me. I'm available. :-)

Vista

One of the scenic vistas along the way.

Time Out

Some of the trip was downtime as you had to wait for the next SAG wagon to come and get you. I liked these little periods to get check out some places off the main trail.

SAG Wagon

Thanks to everyone on our team who took turns driving the SAG wagon. These vehicles carried extra food and water.

We may owe a debt of gratitude to Jill.

"Jill" is the montone voice on the GPS that helped guide the drivers to the intercept points.

Amazing technology. Jill on the GPS not only provided navigation, but reminded some of us that we were wearing the same shirt after two days and it might be time to change it.

Technology...sheeeesh.

Canal Scene

History Lessons

Unfortunately when you're flying down the bike path at 16mph to reach the SAG wagon to get to the precious can of Vienna Sausages you can miss a lot of things.

A lot of history surrounds the C & O Canal. You don't have to be an engineer to appreciate the work that went into building this canal.

If you do take this route build a little time into your schedule to stop at some of these locks. There are display signs with historical information about the scene in front of you.

Here are some web sites to check out to get a sense of the historical significance of the C& O Canal.

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http://www.whilbr.org/searchResults.aspx

Some audio recordings from the oral history section of the Western Maryand's Historical Library website.

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http://www.lib.utexas.edu/maps/national_parks/ches_96.jpg

Map of the whole canal

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http://www.nps.gov/history/nr/twhp/wwwlps/lessons/10cando/10visual1.htm

National Park Service Guide on the Canal. Excellent drawings depicting the building and operating of the C & O Canal.