October 2, 2000

RECOGNIZING 'LOVE NETWORK' STATIONS FOR MAKING A TREMENDOUS DIFFERENCE

Many elements, including outstanding celebrity performances and the overwhelmingly generous response of the American public, contributed to the success of our MDA Jerry Lewis Telethon on Sept. 3-4, which raised a record $54.6 million in support of MDA's war against neuromuscular diseases.

One absolutely indispensable component of that success was the participation of some 200 MDA "Love Network" television stations, which beamed our 21½-hour Telethon event out to some 75 million viewers.

The fact that these community-minded stations have embraced our cause means MDA has an unprecedented opportunity every year to penetrate the American consciousness and educate and inspire people about the progress we're making to defeat these disorders. It's an honor and a privilege to have these outstanding stations in our MDA family.

Recently, the general manager of our "Love Network" station in Portland, Ore., KPTV 12, which has carried the MDA Telethon for 30 years, received a wonderful letter from a parent of a child with a neuromuscular disorder, conferring well-deserved recognition on KPTV for its integral role in helping MDA make a real difference in people's lives in the Portland area. The letter follows:

My name is Terri Mason and I have a son named Carl who has a mitochondrial encephalomyopathy, one of the neuromuscular disorders served by the Muscular Dystrophy Association. I just wanted to take a minute and thank you for your support of MDA and let you know what you have done for Carl through your support.

My introduction to MDA happened a few years ago when Carl's neurologist first suspected a mitochondrial disorder. Carl had gradually lost most of his vision, was losing cognitive skills and although he was almost 5 years old he had the motor skills of an 18-month-old.

I contacted MDA looking for treatment options and support. Even though Carl hadn't been definitively diagnosed with a mitochondrial disorder, the local MDA clinic agreed to take him. The doctor we saw didn't think that Carl had a neuromuscular disorder at that time, as most of his symptoms were neurological rather than muscular.

However, he agreed to continue seeing Carl through MDA until we could find out what was wrong. At a time when all we were hearing was "No, we can't help you because we don't know what's wrong," this simple act made all the difference in the world. It takes a special kind of organization that can set aside the "rules" and truly do what is in the best interest of a child. At a time when I as a parent felt lost and hopeless, MDA added a little hope, a little support, and a lot of compassion.

Later, after Carl was diagnosed via a muscle biopsy, MDA continued with their support. You may be familiar with Quest, a magazine put out by MDA. This magazine has had some incredible articles about everything related to dealing with neuromuscular disorders, as well as some very specific articles recently about mitochondrial disorders. When dealing with caregivers and teachers who often ask "Mito what?," it's great to have these articles to provide information to those who are interested in learning more.

MDA's Web site has also been an incredible resource, devoting an entire section to each neuromuscular disorder.

Last year Carl got his first wheelchair. Since my medical insurance only covers 80 percent for durable medical equipment, MDA was able to come to the rescue again and pay the 20 percent not covered -- a huge help for our family.

With the help of his volunteer attendant, camper Carl Mason, 7, had an unforgettable time at MDA summer camp.

Probably the most incredible service that MDA is able to provide for Carl is its weeklong summer camp. This year was Carl's first and an experience neither of us will ever forget. Almost from the moment we arrived at camp, Carl seemed at ease. It was like the weight of the world was lifted from his shoulders and he was at a place where not only was he able to do and experience new and fun activities, but he was "normal." So what if he wore leg braces -- so did most of the other kids. Big deal that he used a wheelchair -- so did most of the other kids. It didn't matter that he tired easily, couldn't run and jump or needed help with everything -- so did most of the other kids. Those things that make Carl different during the rest of the year were no longer an issue -- they were incidental. You probably never think of a 7-year-old as having a lot of stress to deal with and I never would have described Carl as being "stressed out," until I saw him without that stress at camp.

This is a picture taken of Carl with his counselor, Jane, on the last day of camp, and as you can see, his smile tells the story. It's the biggest smile I've ever seen on this face and I look forward to next year's camp -- just to see that smile again.

None of this would be possible without your support and I just want you to know that your hard work isn't just going to some unknown purpose -- it's truly making a difference in the life of one very special little boy in Portland, Ore. -- and thousands of others like him around the country.

Sincerely,

Terri Mason
Portland, Ore.

If you're among those served by MDA, or just someone who appreciates the work our Association does, please consider taking the opportunity to write to your own local MDA "Love Network" station to express your recognition and appreciation. Let the general manager and staff know you're aware that, by helping MDA, they're giving back directly to the community in an ongoing, positive manner.

With every best wish . . .

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