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 Fairfax County Professional Fire Fighters & Paramedics Local 2068 for Katherine’s Birthday Wheelchair Costume Reveal on Saturday, June 8 at 11am

Picture of a girl in a wheelchair.

WHAT:

  • International Association of Fire Fighters (IAFF) Fairfax Fire Fairfax County Fire & Rescue Department Edsall Road, Station 26 will host the reveal of Katherine’s dream wheelchair costume as she stars as Velma the scientist in the Scooby-Doo Mystery Machine, in celebration of her 10th birthday.
  • Katherine is the winner of the 2023 Muscular Dystrophy Association and Magic Wheelchair Sweepstakes held annually on @MDAorg Instagram channel.
    • Katherine was diagnosed with spinal muscular atrophy (SMA), a progressive neuromuscular disease in 2014 at 8 months old and has attended MDA Care Centers in the DMV area including Children’s National and Johns Hopkins. This disease now has treatment options thanks to funding for research and care.
    • Katherine was one of the first patients to receive a groundbreaking treatment for SMA thanks to research funding from MDA from the IAFF Fill the Boot program.
    • There will be ‘easter eggs’ hidden in Katherine’s wheelchair costume created to her specifications built by Magic Wheelchair’s team with lead builder Stefan Price.
      • Katherine’s wheelchair costume will include adaptive buttons, a flamingo bobblehead on the Scooby-Doo mystery machine and many more features from her imagination.
    • In attendance at this event will be leaders from the Muscular Dystrophy Association, International Association of Fire Fighters, and partners including the DECA, and more.
  • Wheelchair costume reveal to be held with nation’s leading IAFF Fill the Boot fundraising fire department in celebration of the IAFF and MDA’s 70-year partnership to accelerate research and advance care for MDA families.
    • IAFF Fairfax County Professional Fire Fighters & Paramedics Local 2068 are the nation’s biggest fundraisers for the Fill the Boot fundraising program for Muscular Dystrophy Association’s mission: IAFF Fill the Boot History
    • The Fill the Boot program has raised over $700 million to date since 1954, making the IAFF the top fundraising partner in MDA history and its largest organizational partner. Learn more about the story of this 70-year partnership here.
    • The funding from the IAFF Fill the Boot partnership has led to more than 20 breakthroughs in FDA approved treatments for neuromuscular diseases.
  • MDA funds multidisciplinary medical teams nationwide and in the DC/Maryland/Virginia area:
    • 11 MDA Care Centers (over 150 locations across the country)
    • MDA serves over 13,300 people living with neuromuscular diseases in the DMV
    • MDA Care Centers see families in over 5,350 visits per year in Virginia/DC/Maryland
    • Katherine attends virtual MDA Summer Camp - MDA’s Summer Camp program is provided at no cost to families in 22 locations nationwide and virtually, and is supported by funds raised by individuals, corporate and organization partners including those in attendance.

WHO:

  • Joel Kobersteen, IAFF Local 2068 Fill the Boot Coordinator and Fairfax County Fire & Rescue Master Technician and other IAFF officials.
  • Morgan Roth, Chief Marketing Officer, Muscular Dystrophy Association
  • Jennie King, Vice President, 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
    • 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.
  • Scottie Foertmeyer, Director of Outreach, Magic Wheelchair
  • Muscular Dystrophy Association and Magic Wheelchair have collaborated to bring joy to the neuromuscular community for years.

WHEN:

  • Date: Saturday, June 8, 2024
  • Press call time: 10:45am ET
  • Event: 11:00am-12:00pm ET

WHERE:

  • Fairfax County Fire & Rescue Department Edsall Road, Station 26
  • Address: 5316 Carolina Place, Springfield, VA 22151-4401

OPPORTUNITIES ONSITE:

  • Spokespeople available for interviews onsite:
    • Joel Kobersteen, IAFF Local 2068 Fill the Boot Coordinator and Fairfax County Fire & Rescue Master Technician
    • MDA Family members (recipients of the costume): Julie Jeong (Katherine’s mother), Katherine (birthday girl)
    • Morgan Roth, Jennie King, 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 Scooby-Doo wheelchair costume in front of Fairfax County Fire & Rescue Department Edsall Road, Station 26
    • 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

Logos of MDA, IAFF, FTB, Magic Wheelchair

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, Missoula 2021, Boston 2022, Fort Myers 2022, Jacksonville 2024.

About Muscular Dystrophy Association

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, X, Threads, 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 over 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.