Get Ready for the FSHD Walk and Roll 2024

With summer now officially arriving comes the season of a little known event. The FSHD Walk and Roll! It will be held in Tacoma on September 14, 2024 from 12-3PM at Owen Pavilion Park. Most have never heard of something called FSHD. What is FSHD? It’s the third most common type of Muscular Dystrophy. It affects the face, shoulders and upper arms predominately. However, it truly affects the entire body. It can be a debilitating disease and can lead to needing the use of a wheelchair, scooter or other assistive devices. There is no cure for FSHD and while the Walk and Roll is not highly publicized, I think it should be. The more who know, can work together to find a cure and raise money to help the researchers. It currently affects approximately 800k people worldwide. Not even Doctors know much about it who are not in neuroscience. Many of the patients have to explain their medical condition to a Doctor. Many times, they are told whatever is wrong is probably “their Muscular Dystrophy”. This can create a serious distrust of the Medical Field due to the only thing that is causing their symptoms, is Muscular Dystrophy. If I had a nickel for every time I have heard that! One local man lives with this disease and has since he was diagnosed at age thirteen. That day changed his life forever. His doctor walked in and told a thirteen year old Jason, “you have Muscular Dystrophy, there’s nothing you can do about it. Just live with it”. Then the doctor walked out. The coldness of his doctor has stayed with him all these years. He’s now forty years old and works as a Janitor and has a family. He lives here on the Eastside. His family is where his strength comes from. Every time he’s had to go to the doctor, there’s some comments about his appearance. One nurse said to him, “wow, your shirt is deceiving, what little arms you have.” Then another doctor told him that he would “look like Frankenstein” if he had a surgery that would have given him more range of motion. He recently underwent more Physical Therapy due to an IT Band injury. Doctors said it was his Muscular Dystrophy, had to be that. When he tried to make an appointment for Physical Therapy it took seventeen calls to different providers all over the Eastside. Each one refused him as a patient. Why? Because he has Muscular Dystrophy so his problem is Neurological not skeletal. He was giving up and then he found a place who took the time to understand that not everything is Muscular Dystrophy. Jason continues to do the best job he can and continues to show us all that nothing will stop him, not even FSHD. If you want to learn more about FSHD please visit: https://www.fshdsociety.org/ If you would like to donate to the campaign please visit here: https://give.fshdsociety.org/give/426123/#!/donation/checkout If you would like to donate to the team that you’re currently reading about, please go here: https://give.fshdsociety.org/team/585642.