Proceeds benefit National Organization for Rare Disorders
Based on 70 miles, each worth $0.50
My name is Sandy and this February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.
I am joining in support of my friend Angie, that has a rare disease called PKU. Phenylketonuria or PKU is a rare genetic disease or condition in which the patient has difficulty breaking down phenylalanine (Phe), an amino acid found in all natural protein. PKU affects approximately 350 babies born each year in the U.S. alone. That number increases phenomenally if you include PKU births worldwide .
My 60 miles, in 28 days may not sound like much, but I had both my hips replaced 2 years ago and I'm still getting back into the swing of things. I'm willing to my part, how ever little, to help advance treatments, cures and awareness for rare diseases.
This campaign benefits
NORD is a 501(c)(3) nonprofit organization formed as a federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them. We are committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
Contributions made to this campaign are tax-deductible.View Website