Proceeds benefit National Organization for Rare Disorders
Based on 119 miles, each worth $15.42
My great-niece, Avery, has a rare disease - Pontocerebellar Hypoplasia (PCH). PCH is a congenital brain malformation characterized by an abnormally small cerebellar and brain stem. PCH is characterized by impaired brain development, delayed development and problems with movement. She may have PCH but PCH does not define who she is. She is is a beautiful soul who has captured the hearts of her family from the minute she was born. She and others with rare diseases have a long and an uncertain journey in front of them. As an outpouring of my love for Avery, I want to make a difference for the community of individuals who have a rare disease.
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.
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