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20 years ago I came face to face with a monster! I was diagnosed with Miyoshi Myopathy, one of the many forms of Muscular Dystrophy. Little by little, that illness has fettered my life turning simple routine tasks into strenuous activities, basic needs into demanding efforts; not to mention the financial burdens such as, acquiring special equipment, special transportation, and special care! The desire to write this blog stems from the thought that sharing my encounters will prompt others to leave their comments or tell their own experiences and that by sharing our struggles we could find solutions. I firmly believe that it is important to lay bare the challenges a degenerative illness brings to those affected —as well as to their families. I have to let my readers know that English is my second language, which I love, but do not fully command, so I ask for your understanding in case of grammar errors that I might not be able to catch.

Saturday, March 2, 2019

MUSCULAR DYSTROPHY ASSOCIATION


TAGS: neuromuscular disorders, muscular dystrophy, grants,

The use of a walker did not inhibit me from fulfilling my daily routine. I was still able to drive; for a good number of years I was able of folding up my walker, place it in the car's trunk and take it out whenever I needed it. I kept my jobs, both of them. I did my chores at home: made my bed, cooked, washed dishes. I also was able to go on vacations with my husband or even by myself to visit my children and family.

But of course, it was not as easy as before. The difficulties I was experiencing had made me very sensitive to the suffering of people with Muscular Dystrophy. For that reason I paid so much attention to a call I received at the office from a person inviting my boss -a well known Miami lawyer- to be 'jailed' in a program organized by the Muscular Dystrophy Association, in which the 'arrested' called his friends and family to ask them for money to pay for his/her freedom. All the money collected goes to benefit the causes of the association. One of those causes being, funding Grants to research: 'promising theories and therapies that may accelerate treatments' to those living with neuromuscular disorders'.

My boss allowed me to take his place. I did.  Muscular Dystrophy sent an officer to arrest me. I was 'jailed' and I made calls to my friends and family asking them to help me pay my bond.

As a reporter for Diario Las Americas I had many followers; many of them were glad to collaborate with me to pay for my freedom; soon I had collected the money needed.

That was the first time that I helped raise money for Muscular Dystrophy Association's fight against that terrible disease. After my 'imprisonment', I organized luncheons and events for that purpose. Definitely more money than the raised by my children on those distant little carnivals at our front yard in Washington, but with the same enthusiasm.


ARTICLES YOU MIGHT LIKE TO READ:

https://www.mda.org/

LOOKING BACK:

I often reflect on how, before being diagnosed with MD, I seldom thought of the need to fund Grants to research rare diseases and how costly those investigations are.

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