Make a muscle, make a difference.

That’s the motto of MDA, the Muscular Dystrophy Association. I write about MDA regularly here, and with good reason! My nephew has Duchenne’s Muscular Dystrophy.

Long-time readers and anyone close to me in person knows this fact, but for any new readers or any hit-and-run readers, this is probably news to you. So to save myself the finger pain, and to save those who have heard it time, a few quick past-post reads to catch you up.

* What do you know about Muscular Dystrophy?

* When to give. Why to give.

* Weekly Winners (Jan. 24 – 30) — From 2010′s Stride & Ride

* Labor Day Weekend = MDA Telethon

On February 4^th, I’m participating in the next big fundraiser for MDA with my family. The Waco MDA Chapter is holding their Stride and Ride at Baylor University. I’m happy about the event, but not about the location. But, I promise not to be one of those people who decks out in A&M gear from head-to-toe just to prove some sort of point. Whatever that may be. It’s about MDA. And the great work that they do.

Okay, so I might do this:

Ha!

Anyway, I had hoped to raise a lot more money for this from my end, but its like a friend said the other night, you can only go to the well so many times. My Nashville Family has been raising money for some of our members, and funds are tight as it is. So I’ve been a bad team member and not raised much money. Insert sad face here.

I do have a page where people can donate, should any of my readers care to sponsor me for a few dollars. Every dollar, five or ten does help.

My nephew is doing amazing, all things considered. When he was diagnosed so many years ago now, we all went through those stages of denial, anger, fear and finally acceptance. But what MDA never made anyone accept is “the status quo.”  They made it no longer about, “Oh hey, here’s what’s going on. Deal with it.” It was all about, “Here’s what’s going on, and here is how we are not only going to help you to handle it, but we’re going to help you realize there is ALWAYS hope. Because we’re making great strides in medicines and procedures, etc. that could one day cure your loved one.”

Those strides are thanks to donations from others. Donations raised during these special events. Donations raised during the Labor Day Telethon. Donations raised on street corners in small town America during bake sales, but because people care.

If anyone would like to sponsor me and donate to our team, awesome. And I thank you in advance. We all thank you. And if you can’t, I understand and thank you for listening.

From an MDA press release: The 46th annual MDA Labor Day Telethon is getting ready to squeeze 21½ hours of entertainment, awareness-building and fundraising into six prime-time hours on Sunday night, Sept. 4.

Not only is the telethon shorter, but its not ON Labor Day, and it also will NOT be hosted by Jerry Lewis, an absence that will be impossible to miss. “Jerry’s Kids” have looked to him to help raise money for their care for decades. His dedication and love to MDA has been infectious, and he’s successfully raised over $2 billion in his years at the helm. The reason for his absence is not known. It may never be known.

I pray, though, that these changes do not result in a lack of donations. The telethon will be broadcast by more than 150 television stations across the country, and nearly 40 million people are expected to watch. 40 MILLION people. If every viewer gave only $10, that would be $400 million raised. That’s pushing it, I know, but I can dream.

Celine Dion, Jennifer Lopez, Lady Antebellum, Darius Rucker, Martina McBride, Steven Tyler, Jon Secada, Randy Jackson and Richie Sambora are all scheduled to make appearances during the telethon.  Nigel Lythgoe (“So You Think You Can Dance”), Nancy O’Dell (“Entertainment Tonight”), Jann Carl (journalist) and Alison Sweeney (“The Biggest Loser”) are this year’s hosts.

Cody, my nephew, battles Duchenne Muscular Dystrophy.

My nephew will be featured on the Waco, TX station showing the telethon (KXXV Channel 25.) He’s appeared on the telethon the last several years, urging the people of Central Texas to give… he himself is an example of the good MDA has done in this world.

I’ve talked about my nephew and his battle with Muscular Dystrophy a several times in this blog. Specific posts include:

• What do you know about Muscular Dystrophy?
• When to give. Why to give.

My nephew is in 8th grade today… he’s growing up fast. He recently participated in an experimental drug study in Ohio, a drug that could potentially help him walk again some day. More importantly, it could lengthen his life.

He flew for the first time to go to this study. He went through tests that included injections into his stomach… when people commented to him on Facebook that he is brave, he responded simply, “not really:)”

Despite his limitations due to muscular dystrophy, he doesn’t let life pass him by… he worked some at my parents business this past summer, he takes PE (figuring out how to slide in his wheelchair while playing dodge ball), is part of the student counsel, and (if I remember hearing correctly) is a trainer for the football team this year. He plays saxophone in the band, and he’s helping his dad rebuild a 1993 Ford Mustang.

A huge part of his being able to be so active is thanks to the work of MDA.

Directly from the MDA website, some of their services:

MDA sends some 3,500 youngsters with muscular dystrophy to accessible MDA summer camps each year, at a cost to MDA of $800 per camper. There’s no charge to families.

 Tens of thousands of people visit MDA’s nationwide network of some 200 clinics and 38 MDA/ALS centers every year.

 MDA awards research grants to more than 330 teams of scientists and physicians worldwide.

 The Association also:

• assists with the cost of repairs to all types of durable medical equipment for those it serves;
• facilitates meetings of more than 240 support groups around the nation;
• provides thousands of free flu vaccines;
• provides annual occupational, physical, respiratory or speech therapy consultations
• offers advocacy and community outreach;
• provides online support services through the e-community myMDA and myMuscleTeam, a program that helps recruit and coordinate in-home help;
• conducts extensive public education programs; and
• publishes current, accurate and easy-to-understand information about research, health care and daily living with neuromuscular disease via two national magazines, numerous booklets and guides, and online at mda.org.

MDA does wonderful things, and I always urge people to donate. If you’re interested in tuning in this Sunday, check your local listings or find your station on this pdf from MDA.

And thank you in advance… from the deepest places of my heart, thank you.

Your support means more than you will EVER know.

Thank you, thank you, thank you!

Until my nephew was diagnosed with, specifically, Duchenne Muscular Dystrophy.

My nephew turns 13 in a little over a month, and he’s doing well, beating the odds of most kids his age with DMD. And for that fact, everyone close to him is very thankful. He’s smart, handsome and a total joy.

He plays in junior high band. He’s a saxophone player… I think he knows girls find that hawt. (Don’t we.) He consistently amazes me the things he’s interested in and has taught me. I get him a Guinness Book of World Records every Christmas. I like to call it “our thing.”

He has a very distinct knowledge of right and wrong, and more than once I’ve found him to be the voice of my own conscience! He’s working his way towards becoming an Eagle Scout, and he loves cars and trucks. His dad works at a Ford dealership and is a certified mechanic; I think that’s a big part of where that love of cars comes from.

If it wasn’t for the fact that he’s stout and his calf muscles are bigger than most kids. If it wasn’t for the fact that he can’t run or be in any sports. If it wasn’t for the fact that when going a longer distance, he is in a wheel chair, you’d never know there was something wrong.

You’d never know he is dealing with things most people will never have to acknowledge.

What is muscular dystrophy?

First and foremost, muscular dystrophy is a genetic disorder. You can’t catch it from someone. Its not contagious. It’s something you are born with due to basic issues in the individuals genes. These issues weaken the body’s muscles, muscles that we all know from basic science courses make the body move. This weakening continues on as the individual ages, which is why some cases aren’t diagnosed until adulthood.

There are many different types of muscular dystrophy, separated by their rate of deterioration or perhaps by the muscles it attacks.

How many people have it?

According to a report in June 2005 by the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, “Duchenne and Becker muscular dystrophy, alone affect approximately 1 in every 3,500 to 5,000 boys, or between 400 and 600 live male births each year in the United States.” [National Institute of Neurological Disorders and Stroke]

Is it fatal?

Sadly, yes, it can be fatal. Remember the heart is a muscle. Muscular dystrophy can  affect the heart, lungs, etc. and eventually it can claim the individual’s life. (This is the part I can’t dwell on, because it rips my heart out. I think that goes for all of the family.)

My nephew and family at Stride & Ride, an MDA Fundraiser, in Dallas, TX.

What can be done?

Every day research is being done to help combat muscular dystrophy. This research and the knowledge and drugs that have come from it are a big part of why my nephew is doing as well as he is. That along with sheer determination, an optimistic attitude, and absolutely amazing parents (and little sister!) that support him.

This research is a huge part of why the MDA Telethon is so very important. Every dollar helps move the research closer to a cure. Every dollar can help save a life. Every dollar brings hope to those who face muscular dystrophy every day.

So, what’s this Duchenne Muscular Dystrophy your nephew has?

I’ve recently discovered Parent Project MD, which focuses strictly on Duchenne Muscular Dystrophy. They’ve posted a video to YouTube explaining DMD wonderfully. It gives hope, but it also had me in tears at times. But, I want to share it here to educate.

Yes, its almost 10 minutes long, but it is worth it. I promise. Please take the time to watch and hopefully understand.

A few final thoughts: as many people go out on the lake or have a backyard barbecue, many others are relying on the Labor Day telethon to be a success. As you look away from the screen, not wanting to see a child in a wheelchair, families find joy in their child’s life, and they pray for a cure to keep that child living the best life they possibly can.

In our dismal economy, it seems like we’re all having our pocketbooks squeezed until they are dry.  I know mine is… but even one dollar helps. It helps. It matters. I will happily give up a dinner out to see my nephew’s life made better. To see the lives of thousands of kids made better. They are all more than worth it.

My excitement for the day was trumped by this overwhelming hope and joy of the event. As we made the walk around Cowboys Stadium, I was amazed at how all of us there had gathered to celebrate MDA’s strides towards a cure for Muscular Dystrophy. We were all gathered together with one common purpose. There was old and young there. There were people of every race. There teams walked with their friend or family member who have Muscular Dystrophy. There were those walking in memory of a loved one.

The excitement that buzzed in the air trumped the fact we were at the new Cowboys Stadium — a sight in and of itself to experience. And at the end of the day, over $500,000 were raised for MDA (the group with the most raised was a high school team!) and there was this wonderful reminder to everyone there: You are not alone.

Amazing. I am SO GLAD I got to be there… Thank you Scott, Dana, Cody and Jeni for having me there. Go Maynard’s Gang!

For more Weekly Winners submissions, go visit Sarcastic Mom!

We were at Cowboy's Stadium

Boy Scouts on hand to present the colors

We had people cheering us along the way around the stadium

Me and my big brother -- I didn't expect this to come out because we were literally walking at the same time I took this. Much to my surprise, this is one of the best pics of the day!

Carrie and I have been taking pictures like this since junior high school. Only, I think this is the first time one of us had backup singers.

Maynard's Gang striding and riding. My niece and nephew brought friends along, and they took a turn pushing my nephew along.

There are Tvs all over the stadium! Our teams cruising along, checking out the screens.

Our fearless leader!

I can officially say I've been on the Jumbotron at Cowboys Stadium. TAKE THAT! I RULE! COOLEST THING EVAH!

I think these arches in the stadium's architechure are the best part of it.

Cowboys Stadium

We all went to this awesome barbecue restaurant after the walk. This was part of the building's charm. SO NEAT!!

All of my photos on Flickr.

However, right here in our country, there are many people and organizations that are in need. And as everyone finds themselves tightening the belt on spending, those needs become greater. We find ourselves picking and choosing where we give our support.

For me, I have a few places I feel compelled most to help. At the top of that list is the Muscular Dystrophy Association (MDA).

See, my nephew has Duchenne Muscular Dystrophy (DMD), and I have seen the amazing things that MDA is doing with my own eyes through him.

My nephew is, without a single doubt in my mind, one of THE most amazing people anyone would be lucky enough to meet. Why? Simply because of his attitude and perspective on life. He never asks, “Why me?” Instead, he puts his energy and focus on those things he can do.

I still remember attending church one Sunday, and during the children’s sermon, the pastor asked Cody if there was ever a time he said, “That’s not fair!”

And his answer?

“When my sister got to have something I didn’t.”

I remember blinking back tears, and my heart filling with admiration. He could have said any number of things. When I couldn’t play baseball anymore. When I spent a week in ICU one summer. When I can’t join in at PE with the rest of the kids playing ball and chase. But no, when his sister got something he wanted.

He has an easy smile and can-do attitude. I have always said it, and I will continue to say it. I look up to that kid; he is my biggest hero. If I can be even half as optimistic as he is, then I’m doing okay.

It is with great honor that I will be joining him and the rest of the family in Dallas, Texas at the new Cowboys Stadium this weekend for MDA’s Stride & Ride to help raise money for MDA. We are Maynard’s Gang, named by Cody. And even though I don’t do mornings (no, really, I don’t; this isn’t just a funny thing to say), I will be there at 7:30 AM with a smile on my face (assuming I have coffee, then it might not be a smile as much as a smirk), ready to support this great cause. Ready to stand there by my nephew and family. Ready to be a part of this event.

(Besides. Dude. The new Cowboys Stadium. Holy Smokes! I can’t wait to see it! WOW! I think this week’s Weekly Winners has a definite theme ahead. LOL!)

I know from personal experience… dollars are very short these days. But if you can give, even just a little bit, please consider helping sponsor Maynard’s Gang.