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The Lupo Family's NORD 7,000 Mile Rare Movement

Proceeds benefit National Organization for Rare Disorders

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I'm participating in the NORD's Rare Movement Campaign!

In honor of all those with rare disease including our baby girl, Antonia Lucia Lupo (Toni Lu), our family is joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Antonia has a rare genetic disorder called, Feingold Syndrome — a partial deletion of chromosome 2. With limited resources, literature and zero experts with experience, we, like many other families, are the strongest advocates for Antonia.

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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Schedule

DateNamemilesEarned
2/1Day 10-
2/2Day 20-
2/3Day 30-
2/4Day 40-
2/5Day 50-
2/6Day 60-
2/7Day 70-
2/8Day 80-
2/9Day 90-
2/10Day 100-
2/11Day 110-
2/12Day 120-
2/13Day 130-
2/14Day 140-
2/15Day 150-
2/16Day 160-
2/17Day 170-
2/18Day 180-
2/19Day 190-
2/20Day 200-
2/21Day 210-
2/23Day 220-
2/23Day 230-
2/24Day 240-
2/25Day 250-
2/26Day 260-
2/27Day 270-
2/28Day 280-

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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