Katrina's 7,000 Mile NORD Rare Movement: Rise Up for Avery

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.

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