muscle movement fdn. advisory council (MMAC)

(2020)

The Muscle Movement Fdn. Advisory Council (MMAC) consists of our Muscle Champions, and their families, who help better connect us to real-world experiences, barriers, and accomplishments faced by individuals living with neuromuscular disease. Our council is dedicated to discovering ideas and resources, while sharing viewpoints and strategies, to help us enhance our families' quality of life in the best possible ways!


mMAC MEMBERS

MMAC currently has 5 available positions for 2020. If you are interested in serving on the MMAC please submit the form at the bottom of this page! Our MMAC members meet quarterly via a virtual networking platform and one time per year face-to-face!

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Michael LoSapio (DE)

Michael is the Chairman of the MMAC and an all-around "MVP Dad"! He enjoys days on his farm with his sons Michael "Mikey" and Reid and enjoys having them assist him while coaching high school cross country. He relentlessly works 24/7 to pinpoint resources and therapies that may save their lives.

Mikey and Reid are living with duchenne muscular dystrophy (DMD). DMD is a genetic disease that causes muscle degeneration and weakness in the body. It is inherited in an x-linked recessive pattern.

Michael revolves his life around his sons. 3:00 a.m. wake-up calls, 5 hour car rides, days spent in clinical trials and traveling with his sons have become the norm for Michael, Mikey, and Reid. Despite the obstacles presented by muscle disease, Michael prides himself on the strength and resiliency of his sons, and the trio continue to look forward with a positive attitude!

Michael serves as a patient-relations coordinator for Dr. Mena T. Scavina (Nemours Alfred I. duPont Hospital for Children), teaches and coaches, and participates in national conferences associated with neuromuscular disease and DMD.

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Rachel Engler (VA)

Rachel is a breath of fresh air for our Muscle Champions and families in need! She is a living example of a Muscle Movement Fdn. "Muscle Champion", and continues to defy all odds in living with myasthenia gravis (MG).

MG is a neuromuscular autoimmune disease that causes fluctuating muscle weakness and fatigue throughout the body. It may cause double/blurry vision, difficulty with walking, standing, lifting one's arms, talking, chewing, swallowing, and breathing.

Rachel is an ex-NFL Cheerleader for the Washington Redskins, a nurse for our United States Navy, a veteran who has served in Afghanistan, and was nominated as Miss Veteran America 2015 2nd Runner-Up! To say the least, she is very talented and continues to receive many accomplishments.

Rachel has supported the Muscle Movement Foundation since its inception in 2012, by way of advocacy, event participation, fundraising, and more! She also serves as the Muscle Movement Fdn. Virginia State Ambassador! During her free time she enjoys traveling and the outdoors!

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Ken Wallace (PA)

Ken is a loving grandfather to Colton "Colty" and Josh Wallace! Colty and Josh are living with duchenne muscular dystrophy (DMD). DMD is a genetic disease that causes muscle degeneration and weakness in the body. It is inherited in an x-linked recessive pattern, which is why the disease is primarily seen in boys. Unfortunately, the disease is 100% fatal.

Ken dedicates 24/7 to the care and needs of his grandsons. He was thrilled to receive financial support through the MMF to help construct a wheelchair accessible ramp for his grandson, Josh. Now, Josh can independently travel in and out of his home with his power wheelchair.

Ken makes personal sacrifices at the best interest of his grandchildren, he travels to Muscle Movement Fdn. events to ensure Colty and Josh reap the benefits of our inclusive services, and consistently develops life plans to help his grandsons live life stronger!

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Anne Marie Wilkinson (DE)

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Gloria Smith (NJ)

Gloria is a loving mother to her son Harry Smith, who was diagnosed with Emery-Dreifuss Muscular Dystrophy (EDMD).

She operates 24/7 as Harry’s caregiver and also balances a full time schedule as a nurse. Gloria was thrilled to learn about the MMF’s Charity of Champions program and excited for Harry to become involved. Harry was signed to a youth hockey team by way of our program. The result…A new network of support, memories that will last a lifetime, a new passion to play sled hockey, and a new wheelchair accessible automobile to enhance Harry’s quality of life.

Gloria believes awareness is vital in furthering research and treatments for neuromuscular disease. She is a proud supporter of the MMF and her son, Harry, serves as the Muscle Movement Fdn. New Jersey State Ambassador!


SEND US A TIP OR RESOURCE BELOW!

Our Muscle Champions and their families are the true experts! From resources, to home care, to strategies and techniques, our families bring a variety of experiences to the fight against muscle disease!

We will be honored to share it with our Muscle Champions and families in need!

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