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Speedy's NORD 7,000 Mile Rare Movement: Team P.K.U. Matters Society

Proceeds benefit National Organization for Rare Disorders

Completed

Based on 347 miles, each worth $0.25

Ended
1 pledgers

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

My name is Dean “Speedy” Baker and this February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. I run to honor my wife, Angie and the other PKU patients and families I have met in our almost 16 years of marriage. When I met Angie, I did not know what PKU was or what that meant, I just knew I wanted to I wanted to marry her and I needed her in my life. We married within 6 months of meeting and we’ve never left each other’s side. I was beside her hospital bed when she struggled with the effects of being “off diet” and by her side when she decided to enter the Peg-Pal Study to help further advancements in PKU treatment and I stand with her as she embarks on her journey to further awareness for rare diseases from her competing/and reign as Mrs. Kansas Plus America 2017 & 2018 to her involvement 7,000 Mile Rare Movement.

I also run to honor my father, Joe, that we lost to rare disease ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease 6 years ago this last January 1st. He died within 4 months of his diagnosis after 1st being misdiagnosed with parkinson’s disease. My father taught me to be the kind of father & husband I strive to be every day. He never met an enemy and everyone was his friend.

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.

Schedule

DateNamemilesEarned
2/1Day 113.60$3
2/2Day 25.60$1
2/3Day 315.50$4
2/4Day 43$1
2/5Day 520.25$5
2/6Day 62.75$1
2/7Day 728.55$7
2/8Day 83.20$1
2/9Day 918$4
2/10Day 1021.50$5
2/11Day 112$0
2/12Day 1217$4
2/13Day 133.50$1
2/14Day 145$1
2/15Day 1525$6
2/16Day 1620$5
2/17Day 1721.50$5
2/18Day 183$1
2/19Day 191.66$0
2/20Day 203.21$1
2/21Day 2113.17$3
2/23Day 2223.25$6
2/23Day 2316.69$4
2/24Day 2423$6
2/25Day 255$1
2/26Day 2623.75$6
2/27Day 275$1
2/28Day 283.21$1

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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