Going the Distance for Duchenne Awareness

By: NobleHour Special Contributor Natasha Derezinski-Choo

In 2007, Allison Greiner's world changed. Her 21 month old son, Matthew, was diagnosed with Duchenne Muscular Dystrophy, a genetic disorder that occurs mainly in boys with a mutation in the gene for dystrophin. Dystrophin is a protein needed to maintain muscle cell structure. Without it, over time, muscles degenerate leading to further health problems. Less than a year after receiving Matthew's diagnosis, Greiner, a French teacher and mother of three, started Miles for Matthew, an annual 5K/10K race to raise money for Parent Project Muscular Dystrophy. The organization helps fund research programs for Duchenne. 

Greiner is fun, smart, energetic, and a little bit quirky, but most importantly she has a heart dedicated to doing the best she can for others. The slogan for Miles for Matthew is “Hope Starts Here.” After overcoming the initial shock of her son’s diagnosis, she explains, she knew she wanted to do something. She knew she couldn’t cure him herself, so starting this race was her way of fighting for her son. 

The annual event, which expands each year, was held on September 12 in Greensboro, North Carolina. Typically, about 300 runners register and 100 volunteers help on race day. However, Greiner is the sole organizer and this comes with some challenges, including planning the logistics, finding sponsors, marketing the event, and more. 

When soliciting sponsorships, Greiner has a philosophy about keeping it within the community. She believes in asking mostly local businesses to donate to the event, and also asks for assistance from retailers she typically supports. She believes this creates a “beautiful partnership” between the fundraising event and local entrepreneurs.  

This year she received a record $9,750 in donations from local businesses. "Our community supports us well," she says. Sponsorships help fund the event itself. This is very important to Greiner because her goal is that all of the money raised by the runners for race day goes directly towards research.

It’s just phenomenal, the amount of people that want to help.
— Allison Greiner

Sponsors also help provide prizes for the winning runners in each age bracket. The challenge is that it is time consuming to drive to different places, especially for an already busy mother and teacher. Sending emails and following up with sponsors can also take quite a bit of time. However, each year it becomes easier, as she has built a network of contacts that expect her to contact them about sponsorships. 

Greiner said starting the event has made a personal impact on her. "The rewards personally are really profound. It's just phenomenal, the amount of people that want to help." Her biggest takeaway from this experience is that she is glad she has been "open about the hardship of it and creating something that allows other people to help." People around her want to be supportive, but are not always sure what they can do or say to help. Miles for Matthew gives them an opportunity to do something impactful.

Seeing everyone that comes out is an uplifting experience. "People in this community are really generous with their time and donations and moral support," says Greiner on the morning of the race. "I don't think I would know how supported I am unless I asked for it."

The race has been very successful in bringing awareness to the local community. In fact, after the first two years, Greiner decided to move the race to a park closer to Matthew's school. Having the runners pass near the school and around the neighborhood increases visibility for the event. Thanks to a supportive community, Greiner has been able to organize this event that brings hope to her family and to the families of other boys with Duchenne.

Recently Matthew was invited to participate in two clinical trials. Greiner sees this as an indication that the donations she collects really do matter. The progress of research gives Greiner hope. This year, Miles for Matthew raised over $30,000 for Parent Project Muscular Dystrophy. Greiner says it is "one event in a plethora of events...collectively, that's making a larger impact."

Though she is humble about the impact of her local event in comparison to the grand scheme of things, I would argue that the change she has brought to her son's life and to his community is bolder than what most individuals would dare to accomplish. People like Allison Greiner are Community Change-makers because making a positive impact is part of their everyday lives. 

Currently, there is no cure for Duchenne Muscular Dystrophy, and it is the most common among incurable genetic disorders that affect children. For more information about Duchenne Muscular Dystrophy or to make a donation, go to parentprojectmd.org. Learn more about Miles for Matthew by watching the video below:

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