The VF Power Pedal Team Ride for Rare Diseases

The End: Credit Roll

2009-07-03T11:55:00.002-04:00

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.

Let's just close out with this great song by Bruce Sprinsteen:

http://www.youtube.com/watch?v=__nWoN13CJ0

Where the cold wind blows
Tomorrow never knows
Where your sweet smile goes
Tomorrow never knows
You and me, we been standing here my dearWaiting for our time to come
Where the green grass grows
Tomorrow never knows
In the field your long hair flowedDown by the Tildenberry tracks
There 'neath the water towerI carried you on my back
Over the rusted spikes of that highway of steel
Where no more thunder sounds
Where the time goes
Tomorrow never knows
He who waits for the day's riches will be lostIn the whispering tide
Where the river flows
Tomorrow never knows

Things We Learned Along the Way

2009-07-02T13:32:00.004-04:00

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

2009-07-01T23:06:00.001-04:00

We finally arrived.

Abbey Presents Document

2009-07-01T15:08:00.002-04:00

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

2009-07-01T15:06:00.002-04:00

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

2009-07-01T15:05:00.001-04:00

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

Sharon and John

2009-07-01T14:47:00.002-04:00

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.

2009-07-01T14:39:00.002-04:00

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

2009-07-01T14:35:00.001-04:00

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

2009-06-30T21:43:00.004-04:00

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

2009-06-30T21:39:00.002-04:00

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

2009-06-30T21:35:00.002-04:00

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

2009-06-30T21:32:00.001-04:00

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

Stop and walk out onto the bridge overlooking these falls.

Beautiful!

Waterfall Surprise

2009-06-30T21:27:00.003-04:00

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

2009-06-30T21:26:00.000-04:00

One of the scenic vistas along the way.

Time Out

2009-06-30T21:22:00.003-04:00

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

2009-06-30T21:18:00.002-04:00

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

2009-06-30T21:17:00.001-04:00

History Lessons

2009-06-30T21:05:00.002-04:00

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.

==================================

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

==================================================================

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.

Illustration of Lockhouse in 1800's

2009-06-30T20:52:00.003-04:00

Check out this picture which hangs inside the lockhouse shown in the previous posting.

It shows that during its day the canal was a busy place of commerce.

========================

Here are some interesting stats and facts about the canal.

http://www.fred.net/kathy/timeline.html

Canal Chronology
1785 - Potomac Company chartered
1823 - Potomac Company resolved to surrender its charter to a new company
1824 - C and O Canal Company chartered
July 4, 1828 - Ground broken for the C and O Canal
1831 - Canal completed up to Seneca (Mile 23 area)
1833 - Segment to Harpers Ferry completed (Mile 60 area)
1839 - Segment to near Hancock completed (Mile 134)
1850 - Canal completed as far as Cumberland. Decision made not to go farther west.
1877 - Boatmen's strike and devastating flood
1889 - Major devastating flood causing Canal to go into receivership to B abd O Railroad
1892 - Canal repaired and was put back into operation
1902 - Canal Towage Company established. It tightened canal operations and bought up remaining indepentently-owned boats replacing distinctive names with numbers.
1924 - First major flood in 35 years. The ruined Canal closed down permanently.
1936 - Biggest recorded flood in Potomac Valley. Bridges at Harpers Ferry and Shepherdstown washed out.
1938 - U.S. Government acquired the derelict Canal from the B and O Railroad for $2 million. Historic restoration begun on lower 22 miles.
1939 - The Canal was dedicated as a public park.
1942 - Another major flood undid restoration work.
1950 - Proposal for parkway to Cumberland along Potomac to be constructed issued by assistant Secretary of the Interior.
January 3, 1954 - Washington Post editorialized in favor of the proposed parkway construction.
January 19, 1954 - Justice William O. Douglas wrote letter to editor inviting the editor to hike the Canal. The Post wrote in a January 21 editorial, "We Accept."
March 20, 1954 - Hike began at Lock 72 and finished in D.C. eight days later, with editors conceding that Canal should be preserved.
January 23, 1962 - President Eisenhower signed a proclamation to establish the Chesapeake and Ohio Canal National Monument in Maryland (but this did nothing to protect Canal from potential road construction.)
January 8, 1971 - President Nixon signed an act to establish and develop the C and O Canal National Historical Park, authorizing expansion from about 5,000 acres to over 20,000.
June 24, 1972 - Hurricane Agnes caused great damage which took years to repair.
May 17, 1977 - C and O Canal was dedicated to Justice Douglas
November, 1985 - Another very destructive flood, with repairs taking over a year.
January 19-20, 1996 - Devastating flood.
Statistics
General width of canal at towpath level: 50 to 60 feet
General width at bottom: 30 to 40 feet
Depth: minimum of 6 feet of water
Lock size: 15 feet wide, 90 feet long
Typical boat: 14.5 feet wide, 92 feet long (including rudder which could be moved so boat could fit through lock.)
Draw: 4.5 feet of water
Maximum cargo: 135 tons
Typical cargo: 120 tons of coal

Lock Houses Along the Way

2009-06-30T20:46:00.002-04:00

Scattered along the path are these small buildings where the people controlling the locks on the canal would stay.

Here is some history of these locks from about.com.

"The Chesapeake & Ohio Canal (C & O Canal) is a national historic park that dates back to the 18th and 19th centuries. At that time Georgetown and Alexandria were major ports for distribution of tobacco, grains, whiskey, furs, timber and other items. Cumberland, Maryland was a key producer of these items and the 184-mile stretch of the Potomac River was the main transportation route between Cumberland and the Chesapeake Bay.

The waterfalls on the Potomac, especially the Great Falls and the Little Falls, made boat transportation impossible. To solve this problem, engineers created the C & O Canal, a system with locks that ran parallel to the river to provide a way to move goods down the river by boat. Construction of the C & O Canal began in 1828 and 74 locks were completed in 1850.

Hundreds of original structures, including locks and lockhouses still stand and remind us of the history of the canal.Since 1971 the canal has been a national park, providing several great places to enjoy the outdoors. The C & O Canal National Historic Park starts in Georgetown and stretches for 13 miles to Great Falls Park. Visitor centers are located at each end of the canal. "

Along the path

2009-06-30T20:42:00.002-04:00

A fairly typical scene along the C & O Canal path. You break out of the shrouds of trees to get a few sections in the open.

You may also discover these occasional open spaces give you cell phone coverage too.

Shutter Speedin'

2009-06-30T20:38:00.002-04:00

As a photographer I like to mess around with different techniques to get a desired effect. Here I lowered the shutter speed on my camera to increase the illusion of speed.

Actually I was only doing about 5 mph here, but the result makes it appear faster.

Solo In the Hills

2009-06-30T20:27:00.003-04:00

When you ride as a group you may often find yourself riding alone. Everyone finds their perfect pace. At some point you will probably look around only to find that you are riding solo.

There are times when you will feel as if you're the only one on the trail for many miles. Yet, you have the assurance that others are around the bend ahead of you, or behind you. If you planned well you will also have a walkie-talkie to quickly communicate with a member of your team.

It's fascinating to watch the ebb and flow of (people) traffic on the route. Near populated towns you encounter handfuls of other bikers.

These people probably live in the area with the idea of going out for a short trip before heading home.

As you venture deeper into the middle sections of the trail you see fewer people. This is when you realize you have gone into the realm of more serious biking--graduating from simply a fun day ride to one that requires you to sustain yourself on the trail for some way.

Many of the riders in these remote sections are carrying provisions for camping overnight along the trail.

Dirt bike

2009-06-30T20:24:00.002-04:00

If you stop at a motel after a day on the C&O, ask the clerk at the motel if there is a place to clean your bike. Our motel had a hose in the back to wash off.
I was told most of the hotels in Hancock have a cleaning station.

Back Splash

2009-06-30T20:22:00.001-04:00

Most of the team earned their "racing stripes" honestly.

Think about a back fender or even a bike carrier to cut down on the mud splash.

Dirty

2009-06-30T20:17:00.003-04:00

When you ride the C&O Canal Trail be prepared to get muddy. There are sections where you don't have a choice to avoid the muck so you must simply accept it. Become one with the mud.

NOTE: You have to not only avoid mud puddles, but in some sections there is a fair amount of horse excrement to challenge you.

Someone in our group mentioned that you know you're getting closer to Washington D.C. because there is more of this stuff on the trail.

Mary

2009-06-30T20:12:00.002-04:00

Mary Seubert aka as the Energizer Bunny. She was one of three team members (Dave and Joyce being the other two) who completed the entire trip by bike.

Just wind her up, put her on a bike, and Mary will get from Point A to Point B. By her own admission she isn't a fast biker, but a determined one.

On her last day, Mary completed around 70 miles.

Lynn

2009-06-30T20:10:00.002-04:00

Lynn Guerra shortly after we arrived in D.C. Her sense of humor took the rough edges off the day.

Howlin'

2009-06-30T20:07:00.001-04:00

Joyce learns that we only had a few more miles to go until trail's end for the day.

Buddy

2009-06-30T20:04:00.002-04:00

Easy-going, unflappable, and optimistic, Buddy was a great team member. He's the kind who watches your back and that's the kind of person you want on an adventure like this one.

Andrew

2009-06-30T19:59:00.003-04:00

This is Andrew, a friend of Buddy. The guy is a lean, mean bikin' machine usually making it look like fun instead of work. He hopes to enter the Air Force.
Between Andrew and Dave we were well covered with bike mechanics.

If you do a ride like this one be sure to invite/trick/or force someone with bike repair skills on the trip.

Big 200!!

2009-06-30T19:58:00.000-04:00

Was it ever sweet to see my odometer flip over to 2-0-0!

Joyce Juicin' Up

2009-06-30T19:54:00.002-04:00

Joyce Kullman does triathlons so she was ready for the challenge of this ride.

Despite her tire blowing out along the trail near Great Falls, Joyce was able to borrow a bike and keep cranking all the way to the end in Georgetown.

Last part of trail riding

2009-06-30T19:46:00.003-04:00

Here I am on my last ride on the trail ending at Great Falls.

Overall I figure I did two days of 60+ miles, and the other days of varying lengths between 30-45 miles. That's a cool goal realized. My hope was to do more days at 60 miles, but my knee followed a different itinerary.

My left knee grew increasingly sore on the second day climbing a steady uphill grade for 60 miles from Connellsville to Meyersdale.

If you have knee problems try a brace. It did help to some degree. At some point the hardest thing you might have to do is lose your ego and hit the SAG wagon for the last 10 miles.

I more or less took followed my own advice. :-)

Bridge out of Connellsville

2009-06-30T19:44:00.000-04:00

Here is a bridge going out of Connellsville.

Bridge Over the Yough

2009-06-30T19:42:00.002-04:00

One of the spectacular views as we entered Ohiopyle from the bridge. This is looking down on the Yough River.

Take this ride and try to count how many bridges you cross on the way.

You will probably lose count after 10 or more.

Hot Spot

2009-06-30T19:40:00.001-04:00

Our gang at the end of the first day in Connellsville at the Hot Spot.

A Call to Action

2009-06-30T19:36:00.002-04:00

Here is a copy of the document that we delivered to House and Senate aides. Entitled, "A Call to Action: Impact of Rare Diseases on Patients and Caregivers" it's a collection of 300+ messages. These are messages from patients sharing their story of trying to live with a rare disease.

It's a powerful document. We think and we hope it will be a call to action by the people who read it.

Special Delivery Tube

2009-06-30T19:32:00.002-04:00

This is a tube (designed by Mary) that Joyce carried most of the time on her handlebars. Inside was a copy of the book we were delivering to D.C.

Abbey Receives Team Proclamation

2009-06-30T19:29:00.003-04:00

This is Abbey who was the youngest member of the VF team receiving the proclamation from a representative of State Senator Jane Orie's office as the team prepares to launch from Point State Park on June 24.

2009-06-30T07:14:00.001-04:00

63009. 705am. In fredrick maryland. To pittsburgh today. By car!!!!

2009-06-29T18:43:00.001-04:00

Eating steak in a restaurant. Screw vienna sausages!

2009-06-29T18:16:00.001-04:00

We did it! 612pm.

2009-06-29T18:15:00.001-04:00

We did it! 612pm.

Monday, June 29.

2009-06-29T08:18:00.003-04:00

The big day.

Kudos and congrats and deep bows and a 21 gun salute to Dave Nagy, Mary Seubert and Joyce Kullman who took off about an hour ago to complete the full 60 miles today. The rest of us will do scattered miles of biking and driving. We'll all gather in Georgetown at 1:30 p.m. to make the final ride to the Russell Senate Building.
We've invited Obama, but we haven't gotten a confirmation call back yet. :-) He's probably busy today.
We are expecting House and Senate leaders, along with staff from NIH and NORD.

It's the culmination of a lot of work on everyone's part. A true team effort with every single contribution from every member making it all work like a well oiled bike chain.

Enough lame metaphors. Time to hit the trail.

Dr. Dietley..if you're reading this blog I'll catch up to you about my knee next week. Tylenol is my best friend this trip.

Keep the rubber side down and if you're driving down Constitution Ave. around 2:30 p.m. today please watch out for 13 bikers along the road. We've made it this far, we want to make it all the way.

The VF Power Pedal Team

check out dusty's blog

2009-06-29T08:15:00.002-04:00

http://www.addisonssupport.blogspot.com/

One of our blog followers is Dusty. Be sure to check out her blog called, "Training Because I Can". Dusty is a patient with Addison's disease.

Nice blog, Dusty.

2009-06-28T08:29:00.001-04:00

Sunday 830am. Ready for a new day and ride.

Article in Cumberland Paper

2009-06-27T23:46:00.001-04:00

http://www.times-news.com/local/local_story_177232524.html

Interesting story. Our one teammate, Lynn, has a friend in Cumberland who has Vasculitis. Check out this story the paper did on our ride as we met Lynn and her friend in Cumberland.

ice pack

2009-06-27T23:32:00.001-04:00

Improvise where you can. Coke and ice cream make for a great, temporary ice pack on a sore knee.

Dave and Heather

2009-06-27T23:29:00.001-04:00

Dave and Heather Nagy.

Morning Directions

2009-06-27T23:25:00.002-04:00

Don going over the day's stop with Chris. The one thing we've learned is that's easy to plan out everything back home, but once the trip is underway plans change constantly. We're always making sure that we have two drivers and they know our intercept points.

But planning back home and the realities of delays, unexpected issues, etc make it a fluid day-by-day situation.

We have done pretty good on keeping to our schedule, but it's really something that demands flexibility too.

Dirt back

2009-06-27T23:21:00.002-04:00

I have a bike carrier so the mud back splash isn't so bad. If you ride the C&O you should get a fender or bike carrier which helps cut down on the mess.

I don't think I could have done the trip without my 70oz Camel Back water carrier. It's easy to knock through one in 30 miles.

Button

2009-06-27T23:18:00.000-04:00

Muddy, but hanging on---our Power Pedal buttons.

Chris

2009-06-27T23:17:00.001-04:00

Chris Stroyne. Chris has been doing some biking and helping us out a lot with the SAG wagon.

Shadows of bikers

2009-06-27T23:15:00.001-04:00

Here we are looking down into the thick, algae filled canal and lock.

PBS Shirts...

2009-06-27T23:09:00.002-04:00

Here is one of the tee shirts sent to us by Peter Merrett who is a member of the PAN Network. Peter hosts a do-wop radio station in Perth, Australia. In honor of Peter and your station PBS, I rode with it on my bike carrier today. It took a muddy beating, but held strong. A few of us wore your shirts today and promoted your station to those who asked about the logo.

Inside Paw Paw

2009-06-27T23:06:00.002-04:00

Shot inside the Paw Paw Tunnel. Carry a good flashlight, go slow, watch for wet areas and you'll do fine. It may creep you out when the end point is in sight but never quite seems to get there. Don't try to ride in here even with a good headlamp or bike light. Foolish.

Ed and mary

2009-06-27T23:04:00.000-04:00

Ed and Mary on the steps of the Paw Paw Tunnel.

Gang at Paw Paw Tunnel

2009-06-27T23:02:00.001-04:00

Looking down on the gang (minus Ed who is shooting the pic from atop the tunnel entrance).

Canal Path

2009-06-27T22:59:00.001-04:00

This is fairly typical of the scene for this stretch of the ride.

Canal Soup

2009-06-27T22:57:00.001-04:00

This is simply a picture of the water in the canal. The water is stagnant and ripe with life.

Day Four: Cumberland to Hancock

2009-06-27T22:42:00.002-04:00

Long day today folks. We biked 63 miles along the C @ O Canal Path. It's a tree-shrouded path with an old canal on the left and the Potomac on the right. Much of the trail is under a thick canopy of trees, but every so often you break out into the sunlight for a stretch.

We made several stops at the old locks and lock stations along the way. It's rich in history.

The canal that runs alongside the trail is a thick, green soup that surely has some intresting ingredients. We saw many turtles sunning themselves on a log, a snake slithering through the weather, and several birds. If the Creature from the Black Lagoon had an address it would be this canal water. The green in the photos doesn't give you the true color.

On the right the Potomac runs along carrying rafters and kayakers along it's sometimes still, sometimes rapid water.

The highlight was the Paw Paw tunnel. This is a half mile long tunnel with a wooden platform that runs against the wall for the bikers. A railing separates you from the canal below. At first it's deceiving. You go in (have to walk your bike, not ride) and it doesn't seem that long. Then, at some point you turn around the and the opening is a small dot and the end is a smaller dot.
Total darkness so you hope you loaded new batteries into that flashlight.

A great attraction.

The rest of the day was very simple---pedal, dodge mud puddles or go through them, pedal, pedal.

The path is a bit rutted especially after a rain. You will get muddy so accept it and soon everyone has a "racing stripe" of mud up the back.

We pulled into Hancock around 6:30 which is a bit later than we expected. However, the one thing we've learned on this ride is that you can plan all you want from your home, but once you get there it's pretty much adapting to changes in plans.

The best thing to do is roll with it. Everyone on the team has this attitude which makes it so enjoyable.

We're all doing well except for minor scrapes, bumps and bruises.

The best part of the evening was sitting in the quiet of the laundrymat knowing there is clean clothes on the way.

We washed our Power Pedal shirts for the big ride into D.C. on Monday.

That's all, thanks for your support and remember, for every follower a donation is being made to the VF. Send the link to your friends.

Keep the rubber side down and out of the green canal water.

The VF Power Pedal Riders

2009-06-27T15:52:00.001-04:00

Best food in out of way places. Everyone fin together here. Behind sch but who cares.

2009-06-27T15:30:00.001-04:00

320 pm sat @ bills diner. Did about 48 miles 2 day...15 2 go. Knee sore but determined 2 fini. Must eat

Photo 13: Me and the Map

2009-06-26T22:42:00.003-04:00

That's a smile knowing the next part of the trip is all downhill. The first part of Friday was a bit tough for me personally. My left knee has been chronically strained for months, but never enough to stop me. I plogged along today at only a measely 8 mph.

Three Tylenol kicked in as did the downhill slope and I flew down the hill.

I would love to go faster but I don't want to blow out my knee for the rest of my summer riding.

I do make the miles though.

Photo 12: Downhill Scenery

2009-06-26T22:39:00.004-04:00

This is fairly representative of what you see going down into Cumberland. It's a route with mountains on the left, and train track running next to you.

Photo 11: Elevations

2009-06-26T22:32:00.003-04:00

This gives you a good idea of our past two days of riding. Yesterday was approximately 65 miles of uphill (although the grade is not that dramatic). Still, it's a long, slogging uphill climb that took a lot for those of us who are weekend riders. But we did it.

Today, we reached the magic 2392 point..the top of the mountain. And from there it's a beautiful, fairly steep, scenic, ride down the other side of the mountain.

The fifteen miles downhill to Cumberland flies by with hardly a need to pedal that much. For someone who wants to just enjoy a cardio-lite ride with great scenery I recommend this ride.

NOTE: Be sure to have a car waiting in Cumberland. You DON'T want to have to climb this route backwards. And yet, people do. We saw a few teams of riders climbing the hill.

A sweet ride after a day of going uphill.

Photo 10: Peak Experience

2009-06-26T22:24:00.002-04:00

Late this morning we reached the Eastern Continental Divide. It was all downhill from here.

Photo9: Speical Delivery

2009-06-26T22:20:00.003-04:00

This is the canister that carries a copy of the document that we're taking to D.C. (there are about 20 other copies in the wagon). This document has a letter to House and Senate leaders along with more than 300 messages from rare disease patients.

Joyce has been carrying the canister on her bike the whole way.

Mary helped design this cool thing.

Photo 8: Water Break

2009-06-26T22:16:00.003-04:00

L to R: Dave Nagy, Don Guerra, Lynn Guerra, and Mary at one of our water stops somewhere heading towards Meyersville.

We take regular stops to make sure everyone is staying hydrated.

Photo 7: Joyce Kullman

2009-06-26T22:13:00.003-04:00

Joyce Kullman, Ex. Director of the Vasculitis Foundation. Her sense of humor keeps us smiling when we don't feel like using any extra muscles at the end of the day--even the muscles it takes to smile.

Photo 6: Dave and Heather Nagy

2009-06-26T22:07:00.004-04:00

We are thankful to have Heather's husband, Dave, on the trip. He is an experienced biker who brings the confidence that if something goes wrong on the trail that he'll be able to help out.

Photo 5: Heather Nagy Representing the National Adrenal Foundation

2009-06-26T22:02:00.003-04:00

Heather Nagy with the National Adrenal Foundation. She made a huge batch of cookies that are like gold on the trail.

Photo 4: Mary and Ed on the bridge

2009-06-26T21:58:00.002-04:00

Mary and I on the bridge near Ohiopyle. One of the biggest surprises is how many bridges big and small, sturdy and dinky that we cross over in our trek. The bridges often provide the most spectacular views.

Note the black knee brack on my left leg. I've found I need it on most of the time.

Photo 3: Cramped Room

2009-06-26T21:54:00.002-04:00

Picture a small room, a bike and luggage and you get the idea. No matter, it wasn't a tent at the end of the day.

Photo 2: End of first day in Connellsville

2009-06-26T21:51:00.002-04:00

The end of the first day at Connellsville. Note the sign above our heads! Thanks to Dave at Yough River Transport for getting us to our motel.

Photo 1: Group at the Point

2009-06-26T21:48:00.001-04:00

Here is the Pedal Power gang at the Point on Wednesday afternoon. Pictured in the middle is a representative from Sen. Jane Orie presenting us with a proclamation supporting our ride.

2009-06-26T18:05:00.001-04:00

Short trail day and mstly dwnhill. Reporter frm cumberland paper intviewed us. Lynn's friend here has vasculitis. She is joining us 4 town party 2 nite.

2009-06-26T14:42:00.001-04:00

230 fri. Just fin 15 mile dwnhill frm frostburg to cumberland. Way sweet ride, one of the best ever. Gravity and tylenol r a bum knee's best friend. More ltr

Day Two

2009-06-25T21:41:00.002-04:00

Hi everyone. As I write this I'm sitting on a porch of the Yoders Motel in Meyersdale, PA. Joyce Kullman is on my right, and Dave Nagy to my left. Three techno people struggling to find a WiFi signal in this sleepy little town.
It's sometime after 10 p.m. and we just finished dinner a little while ago. We didn't get off the trail until well after 7:30 p.m. due to factors such as the heat, the prolonged uphill grade of the trail, and a nice long lunch in Confluence. We like to be off the trail sooner, but nothing ever goes to the timetable in one's head.
The trail itself is just fantastic. I've lost count of how many bridges we crossed spanning scenic vistas. Most of the trip was in heavily shrouded forest so it helped the sun from beating us senseless.
Today I did about 57 miles--a personal goal. The last two miles of the trip I just stared at my bike speedometer go from 10mph, to 8, to 5, until I was breaking some law of gravity by staying upright. My left knee is cooking a bit..it's sore but still works.

Everyone else is doing great. We take turns riding and driving the SAG vehicles.

It's amazing how many people you meet on the trail who have done the Pgh to DC trip. I really think that more people could do this trip if they had a bike and willpower. It's seriously not all that difficult. You can make it as difficult as you wish.

Well, tomorrow is an easier day of only 38miles into cumberland maryland. There is a big fair going on and we will be meeting the friend of a team member who has vasculitis. The newspaper wants to interview us with her.

So that's it from me. Need a shower and then bed.

Get to sleep in tomorrow!!

thanks for your support.

keep the pedal side down and have a "garbage breakfast" at Ed's diner in Connellsville. It's great..we all say.
the surviving members of the VF power pedal team.

First Day

2009-06-24T21:34:00.002-04:00

End of the first day. It was picture-perfect. At the Point we got a proclamation from Senator Jane Orie's office; Fr. Tom gave us a blessing; and a Trib photographer shot some pics and Barbara Boylan from KDKA radio did a short interview.
We wormed our way through Downtown and finally made our way out past Sandcastle past the Riverton Bridge.

It was hotter than we expected and the advice to drink not only water but electrolyte mixed was good advice.

We arrived in Connellsville only to find that another reporter from the Daily Courier wanted to interview us and take some pics. We weren't seeking the media, but I guess our story got around.

Thanks to Dave from Yough River Transport all of us with our bikes got to the Melody Motel where we are staying tonight.

Tomorrow will be one of the harder days as we go on mostly uphill climb through Ohiopyle and Confluence, ending at Meyersdale.

We're all pretty exhausted tonight.

Thanks for all the support. We eat it up when we hit the wall at mile 57.

Keep the rubber side down and don't knock Vienna sausages until you've tried them. They taste AWFUL good around mile 40.

The vf power pedal team

2009-06-24T10:56:00.001-04:00

Made it out of pgh hot today kdka radio covered aokay

Judy Behind the Scenes

2009-06-22T12:15:00.003-04:00

The VF Power Pedal team owes a debt of thanks to Judy Blankenship who is the event coordinator for the Vasculitis Foundation.
Without her help we could have never done the event. She has been instrumental in helping with contacting media, legislators, office support.
Thanks Judy...you have been a big part of our team.

The VF Power Pedal Bikers

VF Power Pedal: A Call to Action on Rare Diseases

2009-06-22T11:51:00.003-04:00

Yesterday we pretty much completed the "special delivery" that we're taking to Washington, D.C.
This is a 110-page booklet that contains a letter to House and Senate leaders. We also printed up all of the messages left to us by rare disease patients, caregivers and doctors.

All I can say is that it's very powerful. Reading how these diseases devastate individuals, families and friends you can understand the urgent undertone of the messages that more funding needs to be devoted to rare diseases research.

And all we really did was compile the messages many of you sent us. We are just the messengers, but it's the message that will be a call to action. Thank you to everyone who responded and left a message to support our mission.

In all of the focus on the bike ride I don't think we realized that we have ended up with a very unique document. To my knowledge I don't think a report with so many contributions from rare disease patients--in their own words-- that has been done before. Or at least one that will make its way to the Senate Health Committee.

And another thank you to everyone who made a contribution in sponsoring our team. We raised over $1,600.00. In today's economic climate that is a generous amount of money. All the funds will go to the help the Vasculitis Foundation.

So it's time to start packing up our, "Special Delivery" and head on down the trail. We leave Wednesday at 9:00 a.m. from Point State Park.

Thanks for your support.

Keep the rubber side down and come and meet us along the trail!

The VF Power Pedal Biking Team

2009-06-21T13:27:00.001-04:00

Packing, squeezing in a short ride, mary is finishing letter for dc 3days and counting

Thank you to Lynd Fruit Farm

2009-06-19T22:07:00.002-04:00

A thank you to Lynd Fruit Farm of Pataskala, Ohio, for supplying our team with fresh apples for the trip. We welcome the contribution.

Captain Clem At the Helm

2009-06-17T10:24:00.002-04:00

The VF Power Pedal Biking Team thanks Captain Clem for being point person back in Pittsburgh during our ride to Washington D.C.

Clem, who ran a sailboat charter service for many years and is now land-locked in Valencia, will be monitoring the weather for us, taking messages and delivering messages to the team. Captain Clem has years of navigation experience (mostly on the water, but that's okay) so we feel assured he will be helping us navigate through any bad weather, or be able to assist us if a SAG wagon gets lost in the backwoods of West Va.

And his first mate is Stanley the parrot (who isn't always on his shoulder).

Last Training Ride: A comedy of errors and a bloody nose

2009-06-14T21:07:00.003-04:00

Today was our final training ride. Instead of venturing into the back country we drove headlong into the Three Rivers Arts Festival. We started under the 31st Street Bridge, followed the route along the river and then made our way through shortcuts to end at the Irish restaurant near REI on the Southside.

Forgotten tennis shoes and bike helmet, misunderstood directions, a chain falling off, riding through a sea of people made it a really interesting day. That's okay, the view on the bike path that goes from Washington's Landing to PNC park is worth the ride.

And, finally, a lesson in being at the right place at the right time with a first aid kit. Mary and I went up the ramp from the bike path (by mistake) only to see a woman stumble and fall hard to the pavement. Her arm was in a sling from recent surgery so in protecting her arm she took a hard hit to her face and nose.

Blood was pouring from her nose and she was in a lot of distress. Fortunately, Mary and I just purchased first aid supplies to carry on our bikes so we were able to assist until the paramedics arrived.

Funny how things work sometimes. A wrong turn puts you right where you should be at a given moment.

Keep the rubber side (and soles of your shoes) down and don't buy cheap antiseptic wipes. Spend a little more on the good first aid supplies because it can make all the difference when they're really needed.

Support the VF Power Pedal Ride for Rare Diseases. www.vasculitisfoundation.org/vfpowerpedal

Proclamation/Downtown D.C.

2009-06-12T06:54:00.002-04:00

Good morning.
We wanted to share a few exciting news updates.

1. PA State Senator Jane Orie will create a proclamation supporting the bike ride and its mission. A representative from her office will be on hand to see us off from the fountain in Pittsburgh.

2. We have permission to end our ride on the grounds at the Senate Building in D.C. This will include a ride down Constitution Ave on our bikes. Now, that's cool!

3. The Daily American newspaper in Somerset will feature a story about our ride in Sunday's edition. We've also had some media interest and a few other papers plan to catch us along the route.

3. Thanks to the smarts of Dave Nagy who is on our team, we will have a web page so you can track us along the way. Using Google Maps and creating waypoints on a GPS you will be able to see (approximately) where we are along the trail, read short updates, and even see photos.
Good work Dave. The web page URL will be given next week.

And we have raised over $1300.00 and more messages of support keep coming in.

If you haven't done so, we could really use your name and message to Washington legislators supporting rare disease research. Please visit www.vasculitisfoundation.org/vfpowerpedal

Keep the rubber side down and watch the biker in front of you.

The VF Power Pedal Biking Team

Rare and Orphan Disease Groups Participating

2009-06-11T11:04:00.005-04:00

A rare disease is rare only until you or a loved one is diagnosed. Then it doesn't matter how few people get the disease each year.

Below are some of the organizations participating in the VF Power Pedal Bike Ride. We would like to thank each of them for their involvement. Although it's a Vasculitis Foundation event, our message to Washington is that all rare and orphan diseases are serious. Along the route we will be giving out information on all of the groups listed below.

And we owe a huge thank you to the National Institute of Health Office of Rare Diseases Research (ORDR) for working closely with patient advocacy groups like the ones listed here.

National Urea Cycle Disorders Foundation
http://www.nucdf.org/
Platelet Disorder Support Association
http://www.pdsa.org/
National Adrenal Diseases Foundation
http://www.nadf.us/
The Vasculitis Foundation
https://www.vasculitisfoundation.org/
The Polyarteritis Nodosa Support Network
http://www.pansupportnetwork.org/
The Churg Strauss Syndrome Association
http://www.cssassociation.org/
National Organization of Rare Diseases (NORD)
http://www.rarediseases.org/
CARES Foundation, Inc.(Congenital Adrenal hyperplasia Research, Education and Support)
http://www.caresfoundation.org/
Aplastic Anemia & MDS International Foundation
http://www.aamds.org/

We hope that you won't ever need to contact any of these organizations, but if necessary it's good to know the support is there.

Keep the rubber side down and pack lots of peanut butter and jelly for the ride.

The VF Power Pedal Riders

2009-06-11T10:44:00.004-04:00

Well, I guess an event isn't official until a tee shirt promoting it is created. :-)

Thanks to Mary who is the mastermind behind the great design.

Thanks to the Sweat Shop in Mars for the excellent work and quick turnaround.

Check out all of the different organizations participating in this event. To my knowledge I don't think there has ever been a collaberation of so many rare disease groups in a single event.

To date we have raised over $1300.00 and we have gathered more than 250 messages of support to take to Washington D.C. Many of you are responsible by sponsoring us, or leaving a message.

We thank you!

Keep the rubber side down and always carry a camera.

2009-06-08T21:43:00.002-04:00

Thoughts on yesterday's ride:

Beautiful. It is probably the most scenic part of the trail that we have been on so far. Start in Connellsville and go south into Ohiopyle. You're under a canopy of trees most of the way and the Yough River runs alongside.
After seven weeks of training runs on the rails-to-trails route it will be hard to return to highway riding. You get used to an almost level path, no cars, terrific scenery, friendly fellow bikers. It's the only way to go.
Cell phone use is scattered. My Sprint phone was only working about 30% of the whole trip.
The only thing more scattered than cell phone service are toilet facilities along this section. Be prepared.

Our ride boosted our confidence. It was just weeks ago that 30 miles in a day was a milestone.
Now, we are confident can at least two a few days out of the six riding the full 60 miles.

Until then..keep the rubber side down and get off the trail by 8:00 p.m.

2009-06-07T20:37:00.001-04:00

50 miles today. Connellsville to ohiopyle. Beautiful scenery. One bum knee left a rider down. Otherwise best ride so far

2009-06-06T17:31:00.001-04:00

Mobile test

Thank you to Yough River Transport

2009-06-01T20:18:00.003-04:00

The VF Power Pedal Biking Team thanks Dave and Karen Tressler of the Yough River Transport for their donation of shuttling us to our motel from the trail on our first day. We appreciate their time to make our first day go a bit easier.

Yough River Transport is a shuttle service that caters to bicyclists along the Yough River Trail (YRT), the Allegheny Highlands Trail, and the C&O Canal.

http://www.youghrivertransport.com/index.html

Uphill All the Way...Except for Coming Back

2009-06-01T17:46:00.003-04:00

Yesterday a few of the VF Power Pedal Team took to the Butler Freeport Bike Trail. It starts in Freeport and goes (mostly uphill) for 20 miles before ending in Butler. An absolutely beautiful trail with a stream on the right, open farmland in some places, and a dense canopy of trees along the way.

Everyone scattered a bit at their own pace which is fine for a ride like this one. We have several walkie-talkies to keep in touch so noone gets left behind.

Maybe someone can explain why just a few miles outside of Butler the trail goes from decent crushed limestone to suddenly becoming the main road out of Baghdad with ruts, puddles and obstacles. We decided to turn around because it was getting late and we feel that we had accomplished a good day of cycling with the uphill grade.

Hopefully that last stretch of road into Butler will be worked on. Well, not to soon. I think it would be fun to take it on before it gets fixed.

Overall about 37 miles round trip. We're all feeling that inch by inch, bit by bit we're actually getting into condition for doing the big one.

Keep the rubber side down and drink lots of water...

The VF Power Pedal Biking Team

Hitting the Big 4-0 on the Trail

2009-05-25T17:35:00.002-04:00

On Sunday six of us did our third training ride from Cedar Creek to Connellsville. Our goal was to make it 40 miles. We exceeded it by a few extra miles.

Overall a nice trip. It started out hot and sunny, but ended cooler with light rain on the way home.

Observations along the way:

No foolin', there are actually snakes along the way. If you just follow the old chestnut, "Don't tread on me" you will be fine. It's just a good reminder to keep your eyes on the road ahead. And use a loooooooong lense.

We went past a house that has a Coke machine out in the front yard. Ingenious. I'm not sure it's working, but what a great idea. I'm sure you could clean up from riders on days like this one.

Check out the nice little campground just outside of Connellsville. A general store with stuff to quench your thirst, fight off a snack attack, or make some new travelling friends.

Fortunately we have Captain Clem manning the weather desk back at the home office. Cap'n Clem has about a decade worth of experience sailing so he knows how to read a weather map pretty good. It was helpful to be able to call him and find out exactly what was blowing our way. Nothing too much...just enough rain to make us cool off.

Thank You

2009-05-21T21:40:00.002-04:00

Every so often we have to pause and say thanks to the people who are helping to make this trip a reality.

Don Guerra: Don is our main logistics coordinator. He is cranking behind the scenes to make sure we have lodging, transportation, and hopefully a section of the trail over a closed bridge opened for our ride.
No easy task at all.

Mary / Heather / Joyce: Helping me make this not only a ride with friends, but a ride with a greater purpose. Mary is discovering her inner graphic artist as she designs the logo, creates the tee shirts, coordinates with other patient support groups, and a bunch of other details.

Heather and Joyce are busy helping get the word out to the media through our press release.

And a shout-out to Judy Blankenship at the Vasculitis Foundation who is helping Joyce promote or event via the VF.

John Fries: Thanks to John Fries who donated his time to whip our first draft of a press release into a polished, professional document. Here is a blatant, bias endorsement for John--check out http://www.johnfries.com/ if you want to see true creative talent in Pittsburgh. I highly recommend John if you are looking for a writer or graphics designer.

Donna: I actually don't know Donna's last name. Let's just call her Donna the Fitness Trainer. She has been working with me for the last month to help me get conditioned for this ride. Donna has provided me with a comprehensive fitness and nutrition plan that seems to be working. And she keeps me honest about sticking to that plan.

And the biggest thanks to those of you who are sponsoring our event. We really appreciate your support.

Ed and The VF Biking Team

Training Ride II Montour Trail

2009-05-19T10:51:00.002-04:00

On Sunday a bunch of us from the VF Power Pedal Biking Team in Pittsburgh did our second training ride. We followed the Montour Trail for 33 miles.

Good ride, but it also helped to illustrate the unexpected problems that can arise on any long bike trek.

One of our riders suffered a knee strain and she had to stop about 5 miles shy of the trail's end. We rode on ahead to our cars and someone went back to pick her up. This episode reminded us of what can happen on a trail and how critical it will be to have the support vehicles close at hand.

Thanks again for everyone who is supporting us.

The VF Power Pedal Biking Team