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For Frankie's sake, Lutherville family rallies for autism awareness

Kennedy Krieger's ROAR for Autism event is April 29 at Oregon Ridge

By Jon Meoli, jmeoli@tribune.com

1:14 PM EDT, April 24, 2012

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When Lutherville resident Peter Waldron says that the annual ROAR for Autism fundraiser, set for Sunday, April 29, at Oregon Ridge, is much more than a bike ride, he's speaking from experience.

"It's an annual celebration for us to get together with family and friends, and to celebrate Frankie and the strides that he's made each year," Waldron said.

Frankie, Waldron's 8-year-old son, was diagnosed with autism when he was 18 months old.

The following year, Waldron and his wife, Julie, formed a team, Frankie's Friends, for the annual event, which this year includes a Family Fun Festival with children's games and entertainment, food from Wegman's and the Kooper's Chowhound Burger Wagon, and a raffle for an iPad 2.

Since then, Frankie's Friends have raised more than $70,000 for the Kennedy Krieger Institute, including over $15,000 this year, Waldron said.

"The event has been great, because you get to see the same families — families who have been through this for much longer than we have —— but also get to meet new younger couples and families going through it," Waldron said.

"That's been almost therapeutic for us, getting to speak to people who are going through the early stages of it," he said.

Waldron knows the uncertainty of those first few months well. When Frankie was diagnosed, Waldron said, his son was virtually non-verbal. Other than through the movie"Rain Man,"Waldron had never even heard of autism.

"It was completely foreign to me," he said. "I had no clue what that would mean long-term, let along short-term, for his growth and capabilities."

What it ultimately meant was that Frankie "had very few words" until he was around five years old, though he's become much more talkative.

"Now, he recites movies, books and talks up a storm," Waldron said.

Frankie loves movies, with"The Muppets"being a current favorite.

"He'll bring Gonzo into stories or Fozzie Bear into conversation with us," Waldron said. "If you ask him how his day was, he'll tell you how his day was, and then he'll tell you about how Fozzie's day was."

According to Waldron, Frankie likes the Family Fun Festival portion of the event, though some of it is a struggle.

"He enjoys the playground there," he said of Oregon Ridge. "Frankie enjoys public settings and being out in crowds, but he does not enjoy being on stage. He doesn't want the attention, so it's a fun day for him, but it's a long day for him."

Frankie's sisters, Lila, 6, and Millie, 5, enjoy the event as well.

Both girls enjoy the playground, face painting and balloon animals that they got at previous events, and this past weekend, each was wearing a bright red Frankie's Friends T-shirt inspired by Frankie's old nickname, the F-man.

When he was young, Frankie wore a pair of caped Superman costumes everywhere, and his team's shirts now feature an F in the middle of a Superman logo.

The girls wore the shirts for a brother both are very proud of.

"They're coming to grips and coming to the understanding that Frankie is different and their friends at school have older siblings that are different than what Frankie is," Waldron said. "But they're incredibly supportive, incredibly sensitive to him. It's what they've always known. It's part of their daily life."

When asked about Frankie, Millie said he's very smart and knows his subtraction, as well as a lot about the presidents andMartin Luther King Jr.Lila said it's hard for her brother to talk to people.

But since those non-verbal days, Frankie has improved dramatically. He attends school at Kennedy Krieger, where Executive Vice President of External Relations Lainy LeBow-Sachs spoke glowingly of Waldron's contribution to the ROAR event over the years.

"Every year, he raises more and more money," LeBow-Sachs said. "It's fabulous. He has all of his friends, family, anyone he can possibly get to join the team and raise money.

LeBow-Sachs said Waldron is also invaluable as a committee member for ROAR.

"Peter exemplifies a wonderful volunteer," she said. "He's passionate and caring. All the money goes to autism research, and that's what he cares about."

ROAR for Autism, a bike ride, nature walk and family fun festival for autism research, will be held Sunday, April 29, at Oregon Ridge Park, 13401 Beaver Dam Road, Cockeysville. Rides begin as early at 6:30 a.m., and the Family Fun Festival starts at 10 a.m. For details, a listing of events and costs, go to http://www.ROAR.kennedykrieger.org or call 443-923-7300.