A new effort to raise awareness and funding for rare disease is underway. SMA News Today reported that NORD, the National Organization For Rare Disorders, organized this campaign to challenge and encourage Americans to be active in the month of February to help the 7,000 individuals that suffer from rare disease. With national Rare Disease Day approaching at the end of the month, they figured they’d kick the month off right with a grander approach.
For the whole month of February, people will be encouraged to walk, run or bike as many miles are they can with the intention of earning money for every mile accomplished. You can sign up as an individual or as a team, and track your miles over the course of the month. If a team is looking to achieve the 7,000 by themselves, they would need to bust out 250 miles per day! While that is a steep goal, this push is really created to get the buzz around the national and even world about the needs of rare disease patients.
Organizers are hoping that participants reach out to family and friends, blasting on social media, to get sponsors for their miles accomplished. So far, 41 people have registered and are looking to pledge somewhere between $.05 and $4.20 per mile. Celio Health rolled up with the largest team of 30 members and are hoping to reach 2,000 miles collectively over the month. The company is also looking to match the $4,500 if they achieve their goal.
Rare Disease Day has grown massively over the years, being launched in 2008 and now reaching over 94 countries. NORD, which was founded in 1983, is beyond pleased to see the awareness the day has brought in it’s short 10 years.
Together, they hope this month, and the actual day, will be a huge success financially, but more importantly with awareness. Educating the public on this need is more important than anything else. Once that happens, the funding will come.
