VF Power Pedal: A Call to Action on Rare Diseases

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