For almost 30 years, the Jerry Lewis MDA telethon on TV5 has been a way for local families with neuromuscular diseases to thank people for supporting them and area businesses to highlight their collection campaigns.

It's been a chance to raise more money, too.

Those opportunities will be lost this Labor Day weekend since MDA officials have pulled the plug on the show - which has some concerned about the future of local support for MDA.

Madyson Gray has a smile you won't soon forget, made even more precious by the fact the 10-year-old from Winterport is living with a neuromuscular disease.

Madyson was diagnosed with leukodystrophy and mitochondrial disorder when she was two years old.

Over the years, she's been a familiar face on the Jerry Lewis MDA telethon, aired on TV5 every Labor Day weekend.

Not anymore, says Madyson's mom Tracy, now that the telethon will no longer air in Bangor, only Portland.

"The disappointment came from the fact that everything has kind been moved to Portland, like the people in our area and north don't matter anymore. That's kind of how it made me feel."

MDA officials decided to cancel Bangor's broadcast this year, after a format change condensed the show into six hours the night before Labor Day.

They say the cost of airing the show in Bangor outweighed the financial benefits - an argument Gray questions.

"Even if they only end up raising $5,000 above and beyond what it costs, that's $5,000. That's 2 1/12 wheelchairs, lots of MD clinics."

For 17 years, Webber Energy in Bangor has hosted a local golf tournament to raise money for MDA.

The inspiration was the grandson of a former employee, Mathew Fletcher, who lived with a neuromuscular disease.

Steve Donovan, who organizes the tournament, says losing the telethon in Bangor means cutting another local connection to MDA.

"Going toward our golf tournament, I don't think that's really going to have any affect on that. But I gotta believe its going to have an effect locally, people picking up the phone, calling in and saying I should make a donation to this, I've heard of MDA."

A sentiment Gray shares.

"So all of these people in this local area, how are they going to make their donations? Are they going to have to go to Portland and watch down there to make their donations? How do they expect that market to be reached, really?"

Local firefighters reach out to the community all year to raise money for MDA with their Fill the Boot campaign.

Bangor Firefighters are tops in a three-state region when it comes to collecting donations.

Firefighter/paramedic Ryan Blanchette says it's sad to see the MDA telethon leave the market.

"A big way to make money for this area, a big way to get their name out there up here, so it will be missed. But, again, if it's ending up costing them more than what they're making, you got understand."

He hopes the change won't stop people from giving to Jerry's Kids.

"If we don't have the generosity of the public, then us collecting is going no where. So I really hope it doesn't change at all."

Gray hopes it doesn't either, for the sake of her daughter and others like her.

"I'm hoping that people aren't going to be soured like I'm feeling right now. I'm hoping that they're not going to say, well, if they can't be local, then I'm not going to donate. I really want people, if they want to donate, absolutely, because it will impact a lot of people and it will help my child, hopefully, in the long run."

Pauline Cormier says the MDA is working on lots of ways to connect to the community, like a facebook page and monthly e-newsletters.

She says viewers will also be able to watch the national broadcast of the MDA telethon on-line this year, if they can't catch it on TV.

You'll find the broadcast on www.mdausa.org

Print this Story