our Founder and Mission
the Story of Rob DeMasi
The Muscle Movement Fdn. was founded in 2012 by way of Rob DeMasi. Rob was a nationally ranked wrestler, starting running back on the football team, and an academic all-state scholar during his career at Saint Mark's High School (Wilmington, DE). His accomplishments seemed to highlight an amazing high school career and a promising future, but many were not aware that Rob was fighting a daily battle to stay in the game of life. Unfortunately, due to misdiagnoses Rob operated during his high school career with an undiagnosed form of neuromuscular disease. From 14-17 years old, Rob experienced periods of double and blurry vision, difficulty with walking up the stairs, swallowing food, and breathing. Many of these difficult periods resulted in long stays in the nurses office, ambulatory transportation to the hospital, and uncertainty. For four years Rob was misdiagnosed with anxiety, depression, panic attacks, and migraines; forced to believe the symptoms that he was experiencing were made up in his head.
During the second football game of his senior year, Rob fell when attempting to run with the football. And the next play... fell again. Rob was sidelined after he informed his coach something was wrong. Over the course of the next month, Rob lost 30 lbs. and was hospitalized after being virtually paralyzed from head-to-toe. During his hospitalization stay, doctors misdiagnosed Rob once again. Their diagnosis...anxiety and depression. Rob's family physician visited him during her off hours and worked with the psychiatrist to convince the neurologists to run three final tests before discharging Rob. The blood tests were sent to the lab, and Rob was discharged without a proper diagnosis.
The following week, Rob visited his family practitioner who informed him of his proper diagnosis. After four years, he finally received an answer. She stated, "Myasthenia gravis, an autoimmune disease that causes extreme muscle fatigue, weakness, and paralysis. This is what it has been Rob. The whole time..."
In 2012, Rob created a logo on his computer and started a blog website to help connect individuals living with muscle disease, which he referred to as his fellow “Muscle Champions”. He began sharing his story to raise awareness about myasthenia gravis, and additional forms of neuromuscular disease. Rob hosted his first event at a local restaurant in 2012, uniting over 100 community members. Today, he continues his mission to further the MMF’s mission and dedicates 24/7 to help empower families who are affected by muscle disease.
Invite rob to speak or attend a function
Rob travels the country as a motivational speaker to deliver the MMF message. He has presented over 1,000 speeches across the country since 2012. Rob has been invited to speak by hundreds of athletic teams, schools, sporting events, churches, businesses, leadership groups, and physicians. He enjoys delivering speeches about the following topics: neuromuscular disease, faith, overcoming adversity, leadership, athletics, physician-patient relations, and physiological and psychosocial health.
January 2019 marked Rob DeMasi’s ten year anniversary after enduring a thymectomy, which is the removal of the thymus gland in the chest. The Hockessin Athletic Club featured Rob DeMasi in Enhance Magazine, a community magazine dedicated to news, events, and member spotlights, to tell his 10 year journey!
WilmU Distinguished Alumni Nominee
In honor of Wilmington University’s 50th anniversary, the Alumni Association highlighted the names of alumni nominated for the University’s First Distinguished Alumni Award. Rob DeMasi was listed in the 50th Anniversary Issue of the digital WilmU Magazine as a member of this distinguished group of alumni. He was recognized for his exemplary service and leadership with the Muscle Movement Fdn.
Delaware Business Times Winner
Delaware Business Times honored Rob as a 2018 DBT 40 Under 40 Award Winner – a select group of the region’s best and brightest young professionals, who are making a difference with their intelligence, initiative and innovation. The DBT40 Awards program recognizes 40 of Delaware’s most accomplished leaders under 40 years old, for their Professional Accomplishments, Community Service, Leadership and Vision!
Live interview with 94.7 WDSD
94.7 WDSD invited Rob for a live interview just one week prior to the 2018 Muscle Movement Fdn. Delaware Run for Strength 5k.
Service Continues, Post-Saint Mark's
Saint Mark's High School published an article on Rob in their 2016 Fall/Winter PostMark.
Iron Man, Iron Will
In 2016, Wilmington University published an article on Rob in their WilmU Magazine.
CONNECT WITH ROB!
When Rob was diagnosed with myasthenia gravis (MG) in 2009, he stated the following phrase to his family and friends: “MG CAN’T STOP ME”. Since, he has never let the disease hinder his goals and aspirations, Coined by Rob DeMasi, “MG CAN’T STOP ME” has manifested into one of the leading inspirational phrases utilized in the MG community! Please feel free to check out his hashtags on social media:
Send Rob a Message:
" You have made a huge impact! I related to your story on so many levels and it even helped me to understand my own feelings. I shared your story on my Facebook to help my family and friends understand what it is like to live with myasthenia gravis (MG). I found the Muscle Movement Foundation at a time in my life when I needed it most. THANK YOU Rob DeMasi : ) " -Anonymous
" Dear Rob, It was a pleasure meeting you at the MMF event. Like you I also have MG, although I am a senior citizen. My symptoms manifested in 2012 with drooping eyes, slurred speech, difficulty swallowing, and general fatigue. Thank you for telling your story and founding the MMF as a network and support system for those suffering from all types of muscle-debilitating diseases. Your strength and optimism is a true inspiration. " -Don
" Rob is the most courageous, gentle, kindest person ever!! " -Susan
" Hearing Rob DeMasi speak about his personal misfortune in battling myasthenia gravis, an autoimmune form of muscle disease, was amazing. His message directly related to my personal fight in living with MG. His devotion to the community is unique and truly inspiring! " -Rhiannon
" Rob is a phenomenal leader and speaker. I have witnessed Rob give his whole heart to families who have a loved one living with a muscular disease. He wholeheartedly reaches out to communities across the country - inspiring the general public to embrace the opportunity of health. Despite the symptoms he endures from living with myasthenia gravis, he continues to overcome all odds against his disease while empowering others. I encourage all to become involved with MMF and help forge progress and impact nationwide. " -Hazel
" Rob is a true inspiration to many and I love the vision and passion he possesses. I want to try and spread his message as far as I can reach. In all of my coaching career, I have always tried to instill in my hockey players the importance of being humble and respectful on and off the ice. Rob has helped reinforce this philosophy with my players, whether they are at practice, in a game, at school, or just doing daily chores at home. " -Scott