Wanted: Seattle Families Concerned with Duchenne Muscular Dystrophy

Calling everyone in the Greater Puget Sound area affected by Duchenne Muscular Dystrophy!

You’ve probably already heard about our 2009 Climb to Cure Duchenne to raise money and awareness for Duchenne Muscular Dystrophy.  Now we need your help.

We’re looking for local Puget Sound Area residents who have been affected by DMD and are interested in finding a cure. As you may know, one of our primary sponsors for this event is Ruby’s Diner. Ruby’s has locations in Woodinville, Alderwood, and Redmond.

To help us raise money for the Mt. Rainier event, Ruby’s will have donation canisters in all 3 of their Washington locations. Also, they’re having an in-store promotion for their Woodinville location from July 12 through July 18. So we need your help to spread the word.

Be sure to go down to Ruby’s and have a great meal and all for the boys with DMD. It’s a win for everyone involved. Learn more about by clicking here.

If you’re interested in helping out with the Climb to Cure Duchenne in any way, please let us know!

We are still also looking for local sponsors to help with the event. If you or someone you know is interested in receiving great media exposure and donating to an amazing cause, please contact Sean Marshall at 949-872-2552 or sean(at)cureduchenne.org.

If you would like to donate to the 2009 Climb to Cure Duchenne Team, Click here.

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Welcome to Holland

WELCOME TO HOLLAND

by Emily Perl Kingsley

Copyright 1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

A Letter that Everyone Should Read

Our mission at CureDuchenne has always been clear: to find a cure to save THIS generation of boys with Duchenne Muscular Dystrophy.

For the most part, Duchenne Muscular Dystrophy is unknown to the world at large. The boys it affects are too young to have a voice. So the responsibility of spreading the message and raising the funds needed to find a cure primarily resides with the parents of those affected and organizations like CureDuchenne.

CureDuchenne works with many incredible parents, donors, and volunteers all committed to helping our boys. Recently, we received a note from Amy Martin – a mother of a boy with DMD.

Amy’s brief but powerful message shares the emotions that everyone who deals with Duchenne experiences at some point.

With her permission, we share the note with the world:

“I’ve been asking anyone and everyone for things! I tell my story, provide paperwork, answer e-mails, and sometimes I get something…and sometimes nothing…it is really quite exhausting!

I was telling my friend today that unless this disease affects you directly, there is really no motivation. Yes it is sad…but does it really affect you? I am guilty of that as well…I have had people I know suffer losses and I felt very sad…but then your life takes over and you move on. 

Duchenne is not an epidemic…many people will live and die and never hear of it. It won’t go away with genetic counseling, but it also won’t spread to the larger population…that is part of the reason there is still no cure.

It’s up to the people that it affects to do something about it. And those people are the parents of children who live with it.

We can’t give them treatment to try and save them because there is no treatment. We, as parents, can’t find a cure in a lab because frankly, not many of us parents are scientists!  

The ONLY thing we have the power to do is raise money and awareness. So how can we not try? It’s up to the parents to scream loud enough that people will listen, and hope they have enough friends that care. Thank you all for being those people to me. I love all of you.

Love,

Amy

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Amy Martin, together with her husband Chris, spearheaded the Dealing for Duchenne Celebrity Poker Tournament. Chris and Amy were able to rally an amazing group of friends and family that all came together to create a very successful & enjoyable evening.

Because of the combined efforts of Amy & Chris and every single extraordinary individual involved, the Dealing for Duchenne event raised over $200,000 dollars!

To read more about the event, click here.

If you would like to donate to our cause to help people like Chris and Amy Martin find a cure for their son, please click on the “donate” button and make a contribution. And please email us to see how you can volunteer your time and talents to give our boys “a chance for a lifetime”.

Amy sums it up perfectly when she says, “The ONLY thing we have the power to do is raise money and awareness. So how can we not try?”