A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, April 2, 2014

Are you a bike rider?

On Saturday, May 3, 2014 there is a Million Dollar Bike Ride to benefit world-wide rare disease research. This bike ride is on the University of Pennsylvania campus in Philadelphia.



There are 3 different courses: 11 miles, 34 miles, or 73 miles. All experiences are welcome. There are rest stops every 10 miles or so. There is also entertainment at the start/finish line and fun for the entire family.

There are 3 teams participating that are raising funds for NPC research. They are all riding under the Team NPC banner: Chase the Cure, Pedaling to Persevere, and i Pedal 4 CHAD.



If you are interested in participating as a rider you can sign up here.

If you wish to donate to the Chase the Cure team, click here.
If you wish to donate to the i Pedal 4 CHAD team, click here.
If you wish to donate to the Pedaling to Persevere team, click here.

The goal is to raise $17,500.00. If this amount is raised, it will be matched by funds from the University of Pennsylvania and be targeted to research in NPC.

Want to publicize the event? Click here to get the logo and flyer!

The day before, on Friday, May 2, 2014, there will be the First Annual Symposium on Rare Disease, "Emerging Therapy for Rare Disease" in Philadelphia. There is no cost to attend the symposium. More information can be found here.

Am I going? Unfortunately I am not, as we already have a function we need to attend that night.

I realize that some don't have the funds to travel to Philadelphia to ride or the funds to donate. However, I would love if you could publicize the event.

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