Musician's Widow

Make a muscle, make a difference.

Today’s MDA Muscle Walk in Waco, TX, was nothing short of amazing.

I’m a night owl, so I often joke that I’ve forgotten some of those AM hours even exist. So, having to be an hour away before 10 AM was the one and only aspect of the day I did not look forward to experiencing. At least jokingly so. I don’t mind getting up early for things I care a lot about doing, and supporting MDA and my nephew ranks right up there at the top of that list.

When my alarm buzzed at 7 AM, I slapped it a couple times, wishing for “just five more minutes.” But I’m proud to say I was up before my final, “you better get a move on RIGHT NOW” alarm went off. I even had time to grab a couple bowls of Cheerios before a fast shower and out the door.

My parents and I met my brother and family and some friends at his house, before we all headed towards Waco in a little mini-convoy. We made it to the Baylor Indoor Practice Field with plenty of time to spare.

Two years ago, we all participated in the Dallas Stride & Ride event at Cowboy’s Stadium. I honestly expected this to be a lot time that event, and while it was… it wasn’t. Oh, the focus was the same — MDA — and the idea of walking and riding around the field was the same, but the mood was just more personal.

While we had time to visit with others, the event moved quickly and efficiently. MDA provided signs you could personalize with your team name. They took team photos. We had performances from the Baylor Bear Cheerleaders and the LaVega Pirates Cheerleaders. Singer Holly Tucker performed Mariah Carey’s “Hero” — that brought tears to your eyes.

More importantly, we had people speak on how MDA has helped them and why they were walking today — including my brother, nephew and his other aunt. It just brought everything home even more than before.

Before the actual walk, they had us all do the Cha Cha Slide, which… hilarious and fun.

Then as the walk started, and you looked around at all the people there for the same cause, it was moving. I felt tears well up many times, and I swallowed them down behind my camera. It was powerful. It gave such HOPE. It was simply incredible.

As the walk drew to an end, you couldn’t wipe the smile off my face. My nephew snagged a photo with the whole Baylor softball team. And every student that was there volunteering was helpful and friendly.

I’m an Aggie. But… Baylor really impressed me today.

Today was not about school rivalries (though there was some gentle ribbing by the softball coach that even made me chuckle), it was about MDA. And that was what was SO COOL about it. Race. Religion. School allegiance. What TYPE of Muscular Dystrophy. What is your hometown. None of it mattered. Today we were all together under that roof supporting MDA, and the fight to find a cure.

WOW is all I can say.

I briefly spoke to the woman in charge of the event. She’d left me a wonderful voice-mail the other day thanking me for supporting Cody, and saying she understood that I live so far away and I’d not make it. I wanted to let her know I was there after all, thank her for her call, and then thank her for all she does for MDA. Instead, she thanked ME. I told her that even if I wasn’t here already, this is an event I’d fly back to attend. It was THAT powerful.

THANK YOU SO MUCH to my supporters and donors. Our team came in second place in fundraising, behind the LaVega Pirates, and you actually made me one of the top participants (#7!)!

I seriously can not thank you all enough… from the bottom of my heart. Thank you for your support of MDA.

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.

As everyone gets ready for a long weekend to enjoy one last hurrah of summer fun, thousands of people are gearing up for the MDA Telethon. This year’s telethon, however, will be very different from year’s past.

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.

I’ll be honest, up until around ten years ago, I didn’t know much about Muscular Dystrophy. About all I knew was that on Labor Day, Jerry Lewis held an MDA telethon that tore at my heart. Still, I didn’t really understand or connect with it.

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.