MUSCLE CHAMPION (n.) - An individual living and refusing to lose to muscle disease.
Our loved ones- our survivors- Individuals who endure the weakness, paralysis, fatigue, pain, hospital visits, treatments, side effects, and obstacles presented by muscle disease; yet, continue to wake up daily with a smile on their face and live life to the fullest. These individuals are champions- our MMF Muscle Champions. And we want to highlight just how strong and special these individuals are. If you or a loved one is living and refusing to lose to muscle disease, email firstname.lastname@example.org. We'd be honored to meet you!
Some Muscle Champions we have assisted through your support!
✫ Eddie from DE
✫ Jane from IL
✫ Harry from NJ
✫ Damon from PA
MUSCLE MOVEMENT Fdn. ADVISORY COUNCIL (MMAC)
The Muscle Movement Fdn. Advisory Council 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 best enhance our families' quality of life.
MMAC currently has 6 available positions for 2019. 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.
Michael Lo Sapio
Michael is the Chairman of the MMAC. 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 Muscle Movement Foundation Board Member, 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.
Rachel Engler, CRNA
WASHINGTON D.C. (MARYLAND/VIRGINIA)
Rachel is a breath of fresh air for our Muscle Champions and affected families! She is a living example of a Muscle Movement Foundation "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 and difficulties 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! Rachel has supported the Muscle Movement Foundation since 2012, by way of advocacy, event participation, fundraising, and more! She also serves as the Muscle Movement Foundation's Maryland State Ambassador!
Kenneth 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. Unfortunately, the disease is 100% fatal.
Kenneth dedicates 24/7 to the care and needs of his grandsons. He makes personal sacrifices at the best interest of his grandchildren, he travels to Muscle Movement Foundation 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!
Gloria Smith, RN, BSN
Gloria is a loving mother to her son Harry Smith, who was diagnosed with Emery-Dreifuss Muscular Dystrophy (EDMD). She works as a registered nurse and is the Founder of Harry's Heroes, a local organization inspired by the diagnosis of her son. She operates 24/7 as a caregiver and 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 our official New Jersey State Ambassador!
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 table, which empower their fellow muscle champions in need!
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From state-to-state our Muscle Champions are sharing their stories and inspiring others. Understanding muscle disease from a first person perspective is essential for establishing advancements in research and treatments. Essential members of our team, our Muscle Champions are ambassadors who take initiative in spreading the MMF message and heroically take a stand against diseases that cause life-altering circumstances. They voice their reality in efforts to empower fellow Muscle Champions, educate professionals, and lobby for life-changing treatments and support. If you or your loved one is interested in becoming a MMF State Ambassador, please submit the form below.
- Muscle Champion, Mike Smith (Duchenne Muscular Dystrophy)
- Muscle Champion, Rhiannon Downey (Myasthenia Gravis)
- Muscle Champion, Coach Mike Powell (Polymyositis)
- Muscle Champion, Rachel Engler (Myasthenia Gravis)
- Muscle Champion, Harry Smith (Emery-Dreifuss Muscular Dystrophy)
- Muscle Champion, Damon Church (ALS-Lou Gehrig's Disease)
- Muscle Champion, Max French (RYR1 Myopathy)
- Muscle Champion, Angeal Kayiales (Duchenne Muscular Dystrophy)
Interested in becoming an official MMF State Ambassador or a MMAC member?
Submit the form below.