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Rockaroni's NORD 7,000 Mile Rare Movement

Proceeds benefit National Organization for Rare Disorders

Completed

Based on 323 miles, each worth $0.53

Ended
3 pledgers

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We are participating in NORD’s 7,000 Mile Rare Movement!

This February, our family is 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. One of those is Friedreich's Ataxia. Our nephew/cousin Jacob was recently diagnosed with FA, an inherited disease that causes progressive damage to the nervous system. So far it has affected his gait and his heart, and has caused scoliosis. It's difficult to put in writing the symptoms that may or will come. I find I cannot write them with Jacob's name... People with FA may get diabetes, may have serious heart conditions. Most people with FA are wheelchair bound by their teens or early twenties. People with FA have shorter lives. Much too short. Jacob just started high school this year. He is incredibly smart and driven. He loves acting, plays viola and piano, and works hard to ace every assignment, quiz, and test at school. It is our dearest hope that research will lead to a cure, and that Jacob will have decades and decades to share his gifts with the world. You can learn more about Friedreich’s Ataxia at curefa.org. 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.

Schedule

DateNamemilesEarned
2/1Day 17.20$4
2/2Day 215.50$8
2/3Day 322$12
2/4Day 441$22
2/5Day 521.70$11
2/6Day 626$14
2/7Day 716$8
2/8Day 820$11
2/9Day 910$5
2/10Day 1025$13
2/11Day 115$3
2/12Day 1215$8
2/13Day 134$2
2/14Day 149$5
2/15Day 154$2
2/16Day 165$3
2/17Day 177$4
2/18Day 1817$9
2/19Day 194$2
2/20Day 201$1
2/21Day 212$1
2/23Day 221$1
2/23Day 238$4
2/24Day 2419$10
2/25Day 252$1
2/26Day 266$3
2/27Day 274$2
2/28Day 286$3

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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