June is Myasthenia Gravis Awareness Month

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Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Muscular Dystrophy Association and Magic Wheelchair Team Up with IAFF Local 122, Jacksonville Fire Rescue Station 1 for Anna's Birthday Wheelchair Costume Reveal on Saturday, April 1 at 11am

Wheelchair costume reveal to be held on final day of IAFF Fill the Boot fundraising in over 40 locations across the City of Jacksonville for Muscular Dystrophy Association, celebrating longtime partnership to accelerate research and advance care for MDA families.

Firefighters standing, a woman in a wheelchair, in front of a firetruck.
MDA family member, Anna, who lives with Charcot-Marie-Tooth disease, is pictured with longtime partners at IAFF Jacksonville Fire Rescue Station 1 at a recent Muscular Dystrophy Association event.

WHAT:

  • April 1 is the final day of IAFF Local 122 Jacksonville Fire Rescue Station 1's Fill the Boot fundraising drive for Muscular Dystrophy Association
    • Fire fighters will be collecting in over 40 locations throughout the city of Jacksonville
    • Jacksonville Fire Fighters are one of the largest fundraisers in the nation for Fill the Boot
    • IAFF Fill the Boot History
  • IAFF Jacksonville Fire Rescue Station 1 is hosting longtime partner Muscular Dystrophy Association for their collaboration with Magic Wheelchair for the reveal of Anna's wheelchair costume, themed to her favorite movie, Rapunzel
    • Anna's three older brothers will be included in the birthday costume reveal (Anna turns 9 the week following the reveal)
    • The community will gather with IAFF Jacksonville Fire Rescue Station 1
        • Partners support of this collaboration between the Muscular Dystrophy Association and Magic Wheelchair include:
          • IAFF, NALC, CITGO Petroleum Corporation, Acosta Group, Burn Boot Camp, Circle K
    • Just in time for Easter, there will be many ‘easter eggs' hidden in Anna's wheelchair costume created by local Florida Magic Wheelchair build team led by Stefan Price. Anna's wheelchair costume will include a detachable tower and cascading hair.
    • This event will be attended by leaders from the MDA, IAFF and partners, including the National Association of Letter Carriers (NALC) Branch 53, a longstanding ‘Deliver The Cure' fundraising partner
  • Anna is the winner of the 2022 Muscular Dystrophy Association Magic Wheelchair Sweepstakes held annual on @MDAorg Instagram channel
  • Diagnosed in 2017, Anna lives with Charcot-Marie-Tooth disease, a progressive neuromuscular disease
  • MDA funds multidisciplinary medical teams at 9 Muscular Dystrophy Association Care Centers throughout the state of Florida
  • This summer Anna will attend a local MDA Summer Camp (Florida Elks Camp July 30-August 4)

WHO:

  • Randy Wyse, Union President, IAFF Local 122
  • Chip George, Jacksonville Fire Station 1, IAFF Local 122
    • For 68 years, the IAFF Fill the Boot program has raised over $679 million for to accelerate research, advance care, and advocate to empower MDA families to live longer more independent lives for people living with muscular dystrophy, ALS, and related neuromuscular diseases
  • Jeremy Kraut-Ordover, Chief Development Officer, Muscular Dystrophy Association
  • Erin Randall, Fire Fighter Partnerships, Muscular Dystrophy Association,
    • Muscular Dystrophy Association is the #1 voluntary health organization in the United States for people living with Duchenne muscular dystrophy, ALS, and related neuromuscular diseases
  • Christine Getman, Executive Director, Magic Wheelchair
  • Scottie Foertmeyer, Director of Outreach, Magic Wheelchair
    • Muscular Dystrophy Association and Magic Wheelchair have collaborated to bring joy to the neuromuscular community for years. Getman, also an MDA family member living with spinal muscular atrophy (SMA), runs the nonprofit organization that builds epic costumes for wheelchair users of all ages at no cost to families.
  • Sponsor representatives on site include:
    • Acosta Group, Brian Wynne, CEO
    • NALC, Jim Thigpenn, President Branch 53
    • Burn Boot Camp, Jacksonville, Jessica Melquist
    • Circle K – Clayton Mellon

WHEN:

  • Date: Saturday, April 1, 2023
  • Press call time: 10:45am ET
  • Event: 11:00am – 12noon ET

WHERE:

  • Jacksonville Fire Station 1, 611 N Liberty Street, Jacksonville, FL 32202

OPPORTUNITIES ONSITE:

  • Spokespeople available for interviews onsite:
    • Randy Wyse, IAFF Local 122, Union President
    • Chip George, IAFF Local 122, Jacksonville Fire Station 1
    • Family members - recipients of the costume: Kathleen Hopson (Anna's mother), Anna (birthday girl)
    • Jeremy Kraut-Ordover, Erin Randall, Muscular Dystrophy Association
    • Christine Getman, Scottie Foertmeyer, Magic Wheelchair
  • Visual opportunities for b-roll available onsite:
    • Family and partner remarks
    • Fire fighters will reveal the Rapunzel wheelchair costume in front of Jacksonville Fire Station 1
    • Spokespeople from Muscular Dystrophy Association, International Association of Fire Fighters, and Magic Wheelchair will kick-off the event speaking about the mission of the organizations and this collaboration to raise awareness and funds for MDA families

About Muscular Dystrophy Association and Magic Wheelchair

Muscular Dystrophy Association and Magic Wheelchair are not-for-profit organizations committed to empowering families living with neuromuscular diseases. The organizations have collaborated for years, including a Halloween costume reveal in 2020, Boston 2022, Fort Myers 2022, Missoula 2021

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, Twitter, TikTok, LinkedIn, and YouTube.

Magic Wheelchair is a nonprofit organization that builds epic costumes for kids and young adults in wheelchairs – at no cost to families. Our mission is to bring communities together to promote inclusion and self-expression for people with disabilities by transforming their wheelchairs into magic. To date, Magic Wheelchair has served nearly 300 families by supporting builders, makers, and students nationwide to create unforgettable moments and epic inclusion. Learn more or get involved, at magicwheelchair.org. Follow the magic on Instagram, Facebook, and Twitter.