Monday, April 17, 2017 9:00 am EDT
In 2008, a team of four Genzyme employees formed a running team with the goal of completing the Boston Marathon on behalf of a few patients. While they were always interested in combining their love of running with making a difference, this small running team had no idea what they were getting into. What began as a grassroots, employee-driven effort to raise awareness and support for the rare disease community, has since grown in size, scope and impact. Aptly naming their team “Running for Rare”, by 2015 the team had grown to more than 100 individuals training to participate in both the Boston and Providence Marathons.
What makes this team special, however, is not just the running or the fundraising, but the patient partnerships. Each runner is partnered with an individual rare disease patient, giving them the opportunity to get to know them and their family. Runners and their patient partners often form a close relationship, providing a platform to share stories, raise awareness, find support, and connect with others going through similar challenges.
A team of 100 runners meant raising awareness for 100 patients living with rare diseases. It meant 100 unique and important stories.
Stories like the partnership that was formed between employee Orion Martin and Steven, or “Bug” - as his friends refer to him – who is living with a rare disease. Bug’s mom, Kelly, signed her son up for the running partnership program hoping it would give him something positive to focus on. “I originally signed [Bug] up to feel connected to other patients who have rare diseases and who do not have a lot of other people like themselves to identify with,” said Kelly. “What Bug, my husband and I quickly learned is that this is not just a connection for our son, but for our whole family.”
Bug’s patient partner Orion feels just as lucky, explaining that the program is not just about running: It’s about friendship. “Connecting with Bug and the other runners has created friendships that will withstand the test of time,” he said. “Bug always makes me laugh with his endless vocabulary and knowledge of every super hero that has ever existed.”
Bug’s mom Kelly explained that the relationship between the runner and the patient partner reaches far beyond the race day. “We have a tradition of having dinner with the partner runner on Friday nights. Orion and his girlfriend Kim have jumped right in. We have met several times for dinners and we’ve even gone bowling. We have become fast friends.” Orion, Bug and the whole family spend a lot of time laughing, something they all find therapeutic. Orion knows that living with a rare disease isn’t easy. The time he’s spent getting to know Bug and his family has opened his eyes to the obstacles of living with a rare disease. “It pains me to think of the challenges that not only Bug but also his family face every day,” said Orion. “They’re such kind and caring people who always have a smile and are willing to share a laugh.”
In 2016, the team continued to expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. A press release about the transition explained that, as a longstanding partner of NORD, the Running for Rare marathon team has been an exciting part of Sanofi Genzyme for more than 8 years. Transitioning the team to NORD will provide new opportunities for growth through NORD's unmatched national network.
The transition has been a success. Nearly one million dollars has been raised by the team's efforts, all of which support patients' journeys towards a diagnosis. Funds raised by Running for Rare pay for medical testing for individuals who have exhausted all possible avenues to receive a medical diagnosis. These individuals are referred to NORD’s Undiagnosed Program by the National Institutes of Health (NIH) Undiagnosed Diseases Network (UDN), the primary national resource for patients and their physicians who have already tried other alternatives in seeking a diagnosis.
Today, Running for Rare continues to grow, expanding their race portfolio to now include the Los Angeles, Boston, Providence, New York City, and Hartford marathons.
As the running team continues to grow, so does its positive effects. Each partnership means one more rare disease story is told, one more friendship is formed. Bug’s mom Kelly said “The relationships we have created with our runners have become long standing, supportive friendships. We look forward to cheering Orion on for his first running of the Boston Marathon and continuing our friendship long after.”
Learn more about Running for Rare or register to participate in the upcoming Nashville, Providence, and New York marathons.