Rob Demasi's story


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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). 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/blurry vision, difficulty walking up stairs, trouble swallowing food, difficulty completing weekly practices, abnormal fatigue and weakness, and difficulty with 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.

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 on 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.

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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 his fellow "Muscle Champions", individuals living with muscle disease. He started sharing his story and hosted his first event at a local restaurant. Today, he continues his mission dedicating 24/7 to helping empower families affected by muscle disease across America.

 

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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.

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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.

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Iron Man, Iron Will

In 2016, Wilmington University published an article on Rob in their WilmU Magazine.


CONNECT WITH ROB!

  Photo By Luigi Ciuffetelli

Photo By Luigi Ciuffetelli

Send Rob a Message:

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JUNE IS MYASTHENIA GRAVIS (MG) AWARENESS MONTH!

MG is a neuromuscular autoimmune disease that causes fluctuating muscle weakness, paralysis, and fatigue. There is currently no cure.

The Muscle Movement Foundation was founded by way of Rob DeMasi in 2012. Rob founded the MMF after a personal diagnosis of myasthenia gravis. Unfortunately, Rob was misdiagnosed for four years prior to receiving a definitive diagnosis. After being virtually paralyzed from head to toe - unable to walk, talk, swallow, and breathe - Rob received a diagnosis at 17 years of age. To-date, Rob travels the country as a motivational speaker and dedicates 24/7 to raising awareness and support for his fellow "Muscle Champions".

Rob has been fighting an exacerbation relapse for the past eight months. His exacerbation consists of extreme muscular fatigue, weakness, and paralysis, which affects his vision and his ability to walk, swallow food, stand, and breathe. One day after Christmas (2017), Rob endured a "MG crisis" and spent the day in the emergency room. A MG crisis is characterized by exacerbated symptoms, which cause potential life-threatening circumstances.

While Rob fights to regain his strength, one of his biggest supporters has stepped up to fill in to raise awareness. This supporter's wish is to see her big brother on The Ellen Show! Please feel free to view and share this YouTube video! Share on social media and tag Ellen DeGeneres to grant this sister a wish come true!

Utilize our hashtags on social media and view stories about myasthenia gravis:

#TeamMGCANTSTOPME #MGCANTSTOPME #MuscleMovementFoundation #EndMuscleDisease

Nominate Our Founder, Rob DeMasi, To Be Invited On The Ellen Show: Click Here!


testimonials

" 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 your Muscle Movement Fnd. blog 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 muscle disease and has helped me cope with personal adversities. 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