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From the Director’s Bike:   The VF Power Pedal Ride for Rare Diseases

On Wednesday, June 24, 2009 I will set out from Pittsburgh, PA. with fourteen other bicyclists as we travel more than 300 miles to Washington D.C.  We will literally be carrying a powerful message to lawmakers on Capitol Hill.   At the end of the ride the VF Power Pedal Biking Team will deliver a letter containing hundreds of names and messages from rare disease patients, caregivers, physicians, and researchers. 

Our message to Washington is to raise awareness of rare diseases like Polyarteritis Nodosa.  More importantly, we are asking that funding and research continue into rare disease research through organizations such as the National Institute Health Office of Rare Diseases Research and the National Organization of Rare Diseases (NORD). 

We are asking YOU to be the voice.  We on the VF Power Pedal Biking Team will be the messenger.

Here a few simple ways that you can help support this important and exciting event:

1. Go to

2. You can sponsor the our team by clicking on the link provided.  All monies will go to the Vasculitis Foundation’s mission of raising awareness and education of vasculitic diseases such as PAN.  Our goal is to raise $5,000.   Whether you give just $5.00 or more, be assured your donation will help the Vasculitis Foundation continue its mission.

3. You can send your message to Washington.  Click on the email link on the VF Power Pedal Page and leave your name and a short message explaining why further funding and research is so important to you.   Maybe you can’t participate in the ride because a rare disease has robbed you of your energy.   However, you have a greater power that can changes minds and laws in Washington D.C.   Please take a moment and use that energy to add your “voice” to our letter.

Thank you in advance for taking a few moments to support the VF Power Pedal Biking Team and its mission.   Please contact me with any questions.

Ed Becker

Director, PAN Network


The VF Power Pedal Ride for Rare Diseases Press Release  (click here to download the press-release-PDF)

The National Institute of Health Office of Rare Disease Research (link:

National Organization of Rare Diseases (link:

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