Sen. Walsh, Rep. Bentz, Rob DeMasi, Help Pass Resolution No. 35, Deeming June ‘19 Myasthenia Gravis Awareness Month in The First State
DOVER, DE - Myasthenia gravis, have you ever heard of it? More than likely, you have not, and may even struggle to pronounce it correctly. Myasthenia gravis (pronounced my-ĕs-`thēēn-ē-ă grăv-ĭs), also referred to as MG, is a neuromuscular autoimmune disease that causes fluctuating muscle fatigue and weakness in the body. The disease may cause double and blurry vision, difficulties standing, walking, talking, chewing, swallowing, and breathing. An individual living with MG can experience a “MG Crisis”. This is characterized by extreme muscular fatigue and weakness in the diaphragm muscles, causing respiratory failure and the need for immediate life-saving intubation. A MG Crisis may also be complemented with extreme muscular fatigue and weakness elsewhere in the body; such as, in the face, tongue, and swallowing muscles. Unfortunately, there is no cure for the disease and limited treatments are offered to combat its symptoms.
There is a limited understanding to why an abnormal immune response occurs in the body of those living with MG. This abnormal immune response causes the immune system of the individual with MG to make antibodies that mistakenly attack the receptor sites of the neuromuscular junction. This abnormal connection between one’s nerves and muscles create the muscle weakness and fatigue that is experienced by an individual living with MG. When acetylcholine, a neurotransmitter in the body, cannot activate the receptors at the neuromuscular junction, the individual will experience the symptoms explained in the disease. While an estimated 36,000 to 60,000 cases have been diagnosed in the United States, the disease is heavily underdiagnosed. The actual number of cases of MG is probably a lot higher.
The effects of an undiagnosed case of myasthenia gravis (MG) are well understood by Rob DeMasi, the Founder and President of the Muscle Movement Foundation. DeMasi battled misdiagnoses for four years where local neurologists continuously misdiagnosed DeMasi with anxiety and depression. After being “labeled” by one neurologist, the misdiagnosis of psychosomatic ailments seemed to snowball from one neurologist to another. That was until his primary care physician visited him in the hospital and requested for the neurologists to run three final tests prior to discharging him. DeMasi, once again, was discharged without a diagnosis. Fortunately, the following week the test that DeMasi’s primary physician requested returned positive. The anti-acetylcholine receptor (AchR) antibody (Ab) test is a reliable test for diagnosing MG. It identifies the number of abnormal antibodies in the blood that the body is producing. These antibodies mistakenly attack the receptor sites of the neuromuscular junction, causing weakness and fatigue. After DeMasi’s four year battle of misdiagnoses, he was finally properly diagnosed. Not long after his diagnosis, he founded the Muscle Movement Foundation (MMF) to ensure an active resource of support was available for, what he refers to as, his fellow “Muscle Champions” - individuals living with and defying the odds against muscle diseases.
Senator Jack Walsh has taken initiative as an ambassador of the Muscle Movement Foundation, attending the Muscle Movement Foundation’s annual Delaware Run for Strength 5k, which takes place at his alma mater, Saint Mark’s High School. After witnessing the impact the Muscle Movement Foundation was making in his community, he met with MMF Founder/President, Rob DeMasi, to learned more about the fight against MG.
“Until yesterday, I had never run a resolution in the Senate. But, after three years, I decided that this cause needs more attention and that running a resolution would be a good way to do my small part in spreading the word about a disorder that few people know anything about.” -Delaware Senator Jack Walsh
Senator Jack Walsh and Representative David Bentz invited Rob DeMasi to Legislative Hall in Dover, DE for the proposal of Resolution No. 35. If passed, the resolution would recognize the month of June 2019 as Myasthenia Gravis (MG) Awareness Month in the state of Delaware. Senator Walsh and Rep. Bentz both requested for Rob DeMasi to have the privilege of the floor, where both requests were granted. DeMasi first spoke on the Senate Floor, and again, in the House. On Thursday, June 20th, 2019, hope was transformed into reality for individuals who are living with MG in the state of Delaware. Senate Concurrent Resolution 35 was passed by the Senate (19 YES, 2 ABSENT) and passed in the House (by Voice Vote), declaring June 2019 the Official Myasthenia Gravis Awareness Month in the state of Delaware!
“Senator Walsh and Rep. David Bentz have not only listened to the concerns of their constituents, but have also taken action to bring vital awareness to MG. Thanks to Sen. Walsh and Rep. Bentz, the Muscle Movement Fdn. Community remains optimistic that enhanced awareness will help support treatment options, preventative care strategies, and create stronger medical care for our families in need.” -Rob DeMasi, Founder of MMF
As the Muscle Movement Fdn. Message continues to spread throughout the First State, and the country, vital awareness will continue to help inspire action for stronger medical care for families who are affected by neuromuscular diseases.
© Muscle Movement Foundation | www.MuscleMovementFoundation.org