NORD Fundraiser Sets 7,000-Mile ‘Bike, Run or Walk’ Goal for 7,000 Rare Diseases

This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans.

The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by the National Organization for Rare Disorders (NORD), it challenges Americans to collectively walk, run or bike 7,000 miles during the shortest month of the year — which works out to a minimum 250 miles daily — collecting per-mile donations along the way.

“To me, the biggest purpose of this campaign is to call attention to the large number of rare diseases out there that no one’s ever heard of,” Marshall Summar, MD, chairman of NORD’s board of directors, said in a phone interview from Washington, D.C. “There are so many individual diseases that don’t really have anyone looking out for those who suffer from them.”

Some 95 percent of these disorders — which range from ankylosing spondylitis to myasthenia gravis, cystic fibrosis to pulmonary hypertension — have no targeted treatments. Proceeds from the monthlong event will support research grants, patient services, and education.

Dr. Marshall Summar is chairman of the board of directors at NORD. (Photo by Larry Luxner)

Alexa Moore, vice president of development and marketing at NORD’s Massachusetts regional office, said this is the first time her organization is pursuing a fundraising effort whose goal is based on mileage rather than dollars.

“We want to let people get involved, and this could be running, walking or biking. The goal is really to raise awareness,” Moore said. “Each participant will send their friends and family emails or post updates to their Facebook pages explaining that they’re participating and why.”

Those interested in getting involved — either as individuals or as a group — can sign up here and begin tracking miles. On their PledgeIt profile, they are asked to highlight why they support the movement. Registrants will also have the option to buy a participant pack that includes a T-shirt to wear on Rare Disease Day, a commemorative medal and a supporter bracelet.

NORD also asks participants to use the hashtags #RareDiseases and #RareDiseaseDay throughout the month of February to encourage awareness on a broader scale.

To date, 41 people have registered, pledging to donate anywhere from $0.5 to $4.20 per mile. The largest team so far has been put together by Celio Health, which signed up 30 volunteers to walk, run or bike at least 2,000 miles over the course of the month. At a corporate level, Celio is committing to match up to $4,500 for every dollar its participants raise.

Launched as a European initiative in 2008, Rare Disease Day has grown to encompass 94 countries around the world. NORD, founded in 1983, today represents about 270 patient advocacy organizations across the United States.

“We are inviting everyone — families, friends, advocates, patients and the general public — to join us in actively raising awareness and funds through our new 7,000 Mile Rare Movement,” NORD president and CEO Peter Saltonstall, said in a press release. “Our hope is that together, we challenge the community to do something new and different, and get involved to make an impact for the 30 million Americans dealing with a rare disease today.”