If you know me
then you know I have unwavering support for the Muscular Dystrophy Association.
The MDA was huge
for my family, and extended family of friends for my whole childhood.
My brother Michael
was born with DMD (Duchenne muscular dystrophy) and the MDA was there every step
of the way. With support, doctors, and events that help us live a
Because of the MDA my brother got to
go to camp every year, and we all got to spend time with other families that we
could relate too and make more "families" with.
Our local MDA in
Connecticut threw amazing Halloween and Christmas parties, and a great summer
picnic every year. It was normalcy in an abnormal situation.
And I didn't know
it any other way. I'm four years younger than my brother, and by the time
I can remember my family was already deep into the association. And my
brother was even the poster child (now they call it The Goodwill Ambassador)
for the CT MDA, and he loved every minute of it. Meeting politicians,
celebrities, and so on... He was always smiling.
And Labor Day.
From the 1950's until 2014 the MDA
hosted a telethon to raise money for research and more. In the 1960's
they chose to do it on Labor Day weekend, where it happened every year until
2014. Labor Day was a big deal for my family as I was growing up.
Every year we were there, at Channel 3 WFSB (the local affiliate in CT)
and running from event to event... And it was awesome. As I got
older and into my pre-teens and teens I got to actually help out a bit
too. The events were amazing though. And watching all these
people from all over the world give up time on a holiday weekend to help make
My brother died in 1993. Just
a few weeks after the telethon.
He was 22. And he beat the odds.
So for me, even though there was never a cure in his lifetime, he beat the
disease. He won. And the MDA was a huge part in why he lived so
long, and with normalcy in his life.
My brother fought hard to be as
normal as possible his whole life. And for me, he was the most normal
person I knew. And he was my hero.
The following summer the local
telethon producers and the local MDA branch asked to do a piece on him to air
during the telethon. My parents agreed to be interviewed. I really
didn't have a choice. Haha... I was told by them I had to be there
for it. So I was.
Someone at WFSB
back in the day was nice enough to give us a master VHS of the piece.
Feel free to laugh at my hair. And yes, I did have hair!
each year we at Elmwood try to do something for the MDA. And this year
we're hoping you'll step up and join us this year...
For every purchase of "The
Bernice, Too Package" from August 30 through September 3 Elmwood
will be donating $10.00 to the Muscular Dystrophy Association!
Not only will you be supporting the MDA you'll also be supporting Elmwood make
our next film; "Bernice, Too"!
You'll even get a social media shout out on Facebook and a thank you in the
movie once it is completed!