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

Proceeds benefit National Organization for Rare Disorders


Based on 119 miles, each worth $15.42

28 pledgers

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I’m participating in NORD’s 7,000 Mile Rare Movement!

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.



2/1Day 1--
2/2Day 2--
2/3Day 35$77
2/4Day 410$154
2/5Day 56$93
2/6Day 6--
2/7Day 7--
2/8Day 84$62
2/9Day 9--
2/10Day 10--
2/11Day 115$77
2/12Day 12--
2/13Day 133$46
2/14Day 145$77
2/15Day 154.50$69
2/16Day 16--
2/17Day 173$46
2/18Day 184.50$69
2/19Day 195$77
2/20Day 204$62
2/21Day 213$46
2/23Day 224$62
2/23Day 235$77
2/24Day 24--
2/25Day 25--
2/26Day 264.50$69
2/27Day 274$62
2/28Day 28--

This campaign benefits

National Organization for Rare Disorders

Verified Charity

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.

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