About Us
Our Vision
To serve as the premier support organization for Delawareans who are affected by neuromuscular disease.
Our Mission
To enhance the quality of life of families who are affected by neuromuscular disease through advocacy, inclusion, and family assistance.
Our Values
Respect: Respect the abilities of all individuals.
Responsibility: Responsibility to steward MMF’s mission with integrity.
Resiliency: Remain resilient in overcoming barriers to empower families in need.
Our Story
At the heart of the Muscle Movement Foundation (MMF) is the indomitable spirit of Rob DeMasi. For four grueling years, Rob battled life-threatening complications and side effects due to misdiagnoses. As a 17-year-old, he spent an agonizing twenty days in the hospital, virtually paralyzed from head to toe. This marked the end of his journey with misdiagnosis.
Finally, Rob received a proper diagnosis—myasthenia gravis (MG), an autoimmune disease characterized by fluctuating muscle weakness and fatigue. Throughout his ordeal, Rob was uplifted by the unwavering support of “his team,” his personal support system, which stood by him during the most challenging times of his life.
In 2012, Rob founded the Muscle Movement Foundation with renewed purpose. His vision was to foster a collective effort in the battle against muscle disease, enabling affected families to live life stronger.
Since its inception, Rob has tirelessly worked as a motivational speaker, traveling nationwide to inspire communities and mobilize volunteerism to support MMF’s mission. He is dedicated to raising crucial awareness and supporting his fellow Muscle Champions, operating round-the-clock to ensure no one battles muscle disease alone.
Facts
Across the United States, over one million cases of neuromuscular disease have been reported. These diseases can severely curtail an individual’s ability to perform simple muscular movements such as walking, talking, eating, and even breathing. The complexity of these conditions often stymies our leading research centers and medical professionals, leading to life-altering circumstances and, in some cases, death.
While there is currently no known cure for neuromuscular disease, we are undeterred in our mission. We tirelessly strive to provide support and accommodations that can significantly enhance the quality of life for affected families. Our commitment remains steadfast: to stand by those in need, offering hope and assistance in their challenging journey.
Accommodations
Physical Support
As our Muscle Champions progress through the stages of neuromuscular disease, they may face physical challenges such as fatigue, weakness, and paralysis. To address these symptoms, we offer a range of physical accommodations, including wheelchair-accessible vehicles, ramps, stairlifts, walkers, and other medical equipment. We aim to enhance autonomy and strength, promoting a better quality of life for our champions.
Financial Support
When someone receives a neuromuscular disease diagnosis, it adds financial stress. The costs associated with medical bills, medications, co-pays, travel, and daily living can accumulate rapidly. We aim to provide financial support to our Muscle Champions and their families, granting them the best chance to conquer the impact of the disease.
Emotional Support
Living with a neuromuscular disease can lead to emotional distress, as it may result in isolation, insecurity, and uncertainty. Our organization strives to connect Muscle Champions in local communities to provide the love and support that every individual deserves. We aim to answer questions through peer-to-peer support groups, foster communal relationships, and strengthen coping strategies.
Who We Serve
The MMF is dedicated to raising national awareness for neuromuscular disease and making a meaningful impact on the lives of affected Americans. Through our MMF Muscle Champion Support Program, we provide direct assistance to local families in Delaware affected by neuromuscular disease, offering physical, financial, and emotional support. Neuromuscular disease encompasses many conditions that can cause debilitating symptoms and significantly impact one’s quality of life.