On March 29, fire fighters from departments throughout the northeast gathered at Mohegan Sun Casino in Connecticut for MDA’s annual Fill the Boot Camp event. The goal of the one-day gathering is to provide fire fighters with the training and information needed to have a successful Fill the Boot season and to celebrate the accomplishments of the previous fundraising year. And there was a lot to celebrate!
Last year, Fill the Boot raised more than $24 million dollars for MDA. The program, a collaboration between the International Association of Fire Fighters (IAFF) and MDA, is one of MDA’s signature fundraising events. Since 1954, Fill the Boot has raised more than $600 million dollars to fight neuromuscular disease. With IAFF’s unwavering support through the decades, research has progressed to the point where several new drugs have been approved by the FDA within the last two years.
This is the second Fill the Boot Camp event I have been to, having also attended the 2016 event at Mohegan Sun. I remember the convention hall being packed to the brim that year; this year it looked to be even more full. I would later learn that my eyes didn’t deceive me — there were over 400 fire fighters in attendance, making it the largest Fill the Boot Camp hosted across the country.
Run of show
There was a palpable buzz in the room in the hour preceding the event, with fire fighters, MDA staff and families conversing and mingling with one another during lunch. I enjoyed the opportunity to meet fire fighters from all over the northeast. Some came from as far as New Jersey and Maine, having just arrived a few minutes before.
After lunch, the event kicked off with a moving bagpipe procession and an MDA introductory video. During the next two hours, several speakers came to the stage to talk about MDA and IAFF’s longstanding commitment to ending neuromuscular disease and to recognize fire departments who have gone above and beyond in Filling the Boot.
Some highlights from the day:
- Karen Alexander, MDA’s chief philanthropic officer, talked about the decades-long partnership between MDA and IAFF and how in the past few years the money raised by fire fighters has led to several new FDA-approved treatments. Jeanne Zucker, senior vice president of Healthcare Partnerships at MDA, picked up where Karen left off, providing a scientific research update for the audience. Jeanne mentioned that there are a record number of clinical trials currently in progress and more than 90 treatments in clinical pipelines today, all of which could not be possible without the support of IAFF.
- IAFF leadership spoke to their longstanding commitment to MDA. Ed Kelly, general secretary-treasurer at IAFF, spoke of the campaign’s humble beginnings at a firehouse in Boston in 1954 and how it has grown into the fundraising powerhouse it is today.
- Roger Lopez, a fire fighter from San Antonio and the IAFF/MDA national coordinator, talked about visiting MDA Summer Camp for the past 15 years and how the future is brighter now than ever before for MDA kids. One quote stood out for me: “Fifteen years ago, we never asked about their dreams,” Roger said. “Now, there’s been a big shift. Kids are living longer, going to college and dreaming about their future.”
- MDA families captivated the crowd, sharing their journeys and talking about the importance of Fill the Boot. The audience first heard from MDA National Ambassador Justin Moy, who thanked the fire fighters and talked about his active, no-limits lifestyle and how excited he was to be attending college in the fall.
- Later in the afternoon, the Riley family from Thomaston, Maine, took the stage to share their family story. Parents Ainslee and Shane talked about raising two sons with Duchenne muscular dystrophy, Evan (Maine’s state ambassador) and Liam, and how, because of fire fighters’ efforts to help further scientific progress, their boys are enrolled in a clinical trial that could have a significant impact on their futures.
- Toward the end of the day, the crowd heard from former Connecticut State Ambassador Marley Robinson, 17, who is also benefitting from significant advances in research. Marley, who lives with spinal muscular atrophy type 2, has been taking Spinraza for a little more than a year and has noticed improvement in her breathing. And like Justin, she will be attending college next fall. After hearing Roger Lopez talk earlier about the improved prognosis for kids living with muscular dystrophy, it was heartening to see two young adults planning for college life and beyond.
- In the afternoon, each state broke into separate breakout rooms to discuss local issues pertaining to Fill the Boot, answer questions and meet with MDA families. Fire fighters learned about the logistics of the program (such as where to stand to safely take donations and the best time of day to do it) and how to gain support from everyone in the fire house.
Overall it was a whirlwind of a day that culminated with a giant cake to celebrate IAFF’s 100th birthday. It was great to see so many new fire fighters at this Boot Camp for the first time, in addition to the IAFF leadership who attend every year. Inspiring a new generation of fire fighters to continue the decades-long tradition of Filling the Boot is crucial. They are a valued partner in the fight to end neuromuscular disease, and their support means a lot to families such as my own.
Ed Kelly said it best when he talked about the importance of IAFF continuing to support the MDA community: “It is important to show that we have their back.”