A Call to Action

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.

Rare and Orphan Disease Groups Participating

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

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.