Firefighters to Hike 130 Miles to Raise Awareness of Neuromuscular Diseases and Promote Newborn Screening

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by Mary Chapman |

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Building on their international trade association’s relationship with the Muscular Dystrophy Association (MDA), two Virginia firefighters will set out on a 130-mile hike this month to raise awareness of the partnership, and to promote newborn screening for neuromuscular conditions.

The firefighters — medic Joe Jarman and lieutenant Travis Saunders — will kick off March for MDA on March 24 in Virginia Beach, Virginia. With stops to eat and rest at fire stations along the way, and visits with community members, they’ll wind up in Richmond around March 29, where they’ll be joined for the final “MDA Mile” by individuals affected by neuromuscular disorders, as well as firefighters from across the state.

The effort is part of the MDA’s Fill the Boot campaign which began in 1954. Since then, the International Association of Fire Fighters (IAFF) has raised more than $650 million to support groundbreaking research and the MDA’s many patient programs, including a nationwide network of about 150 MDA Care Centers at leading medical institutions. 

With 315,000 firefighters and paramedics, the IAFF is the MDA’s largest national partner. For information and videos about the fundraiser, click here. Visit this site to find an IAFF local or to make a donation.

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“With MDA, the IAFF’s support is not going to come to an end until the need for MDA doesn’t exist,” said Harold A. Schaitberger, IAFF general president, in a press release. “The marriage between the devotion of firefighters with the cause of MDA has emerged as one of the strongest examples of selflessness in the history of charity, and we remain committed to elevating this tradition to even higher levels in our 65th anniversary year of partnership.”

These days, the partnership is enhancing its efforts by working to expand newborn screening in the United States for neuromuscular conditions such as Pompe disease and spinal muscular atrophy (SMA). 

Currently, most parents learn that their child has a neuromuscular disease after symptoms have appeared. The period between symptoms and diagnosis can be time consuming and emotionally draining. However, when babies are diagnosed at birth, typically by examining a small blood sample, they could immediately receive life-saving or life-changing therapies. Such testing can also provide families a genetic diagnosis, which is often required to be eligible for clinical trials.

Pompe and SMA are currently the only neuromuscular disorders on the national list of diseases recommended for newborn screening, although that has not been implemented in every state. The current conditions tested in a newborn screening panel in each state is listed on this website.

“IAFF members display an unwavering support for MDA year after year, raising critical funds and awareness to help our families get the strength and resources they need,” said MDA CEO and president Lynn O’Connor Vos. 

“We are so thankful to all of the firefighters who participate in Fill the Boot, especially Joe and Travis for their passion and commitment to go above and beyond to support the MDA community,” she said.

Follow the firefighters’ expedition here with live feeds starting March 24, or on Facebook and Twitter. Photos will be shared on Instagram.