NewburyportNews.com, Newburyport, MA

June 7, 2013

Believing in a cure

Local teen raising money for AT/RT research hopes to meet his idol, Justin Bieber

By Jim Sullivan
Correspondent

---- — The world knew her as “Mrs. Bieber.”

Now, Avalanna Routh’s legacy may help one Newburyport High School student meet his idol, as well.

Avalanna was the 6-year-old Merrimac girl with atypical teratoid rhabdoid tumor (AT/RT), a rare form of brain cancer, who “married” pop star Justin Bieber in a play wedding at the Jimmy Fund Clinic in 2011. The story became a national sensation, and Bieber was so moved by Avalanna that he pledged to meet the person who raises the most money by July 1 for Cure ATRT Now.

Avalanna died in September, but Bieber’s promise still stands, and 16-year-old Jared Bedard has jumped at the chance.

“My mind started going for Jared,” said Jared’s mother, Karen Bedard. “Because he loves music, he loves performing, and he loves Justin Bieber.”

Bedard brought her ideas to Beth Manning of Newburyport Youth Services, who in turn helped put together Facebook and Twitter pages for Jared, who has Down syndrome. Things began to grow from there.

“For Jared, it’s about him getting out there,” Bedard said. “Being in the community and doing what he loves. He just wants people to see him.”

Now, Jared has embarked on a fundraising tour that began last Monday at Orange Leaf Frozen Yogurt, where he sang, danced and played the guitar to Bieber’s music. Orange Leaf donated 15 percent of its proceeds from that day to the cause.

“When Bieber first started out, before he got discovered, he used to do that,” Bedard said. “He would go play his guitar and sing. Jared has watched his movie (“Never Say Never”) so many times that that is what he wants to do. To sing in front of people and be discovered.”

Jared’s next event is at Not Your Average Joe’s on Tuesday, with the restaurant donating 15 percent of its proceeds from patrons who mention Jared’s name.

His fundraising tour comes to an end at the Port Tavern on Thursday with “Jared’s Cure AT/RT Evening,” which will feature music from the band Acoustick from 6 to 9 p.m.

Donation boxes are also located at the Latitude Sports Clubs in Salisbury, Methuen and Peabody, as well as at the Morning Buzz Cafe in Amesbury. Additionally, a GoFundMe page has been set up online and has brought in more than $4,500 so far.

“He knows that he’s raising money for this,” Bedard said. “And I keep telling him that’s for all the other sick kids that are out there that have AT/RT. And he is like, ‘OK, so when is my fundraiser? When am I playing?’”

The Cure ATRT Now nationwide competition to meet Bieber was organized by Avalanna’s parents and started April 1. The top fundraiser will get two tickets to a Bieber concert, airfare and hotel accommodations, and a meeting with the 19-year-old singer before the show.

“He is fun-loving and determined,” Bedard said of Jared, who recently discovered Elvis Presley. “He is independent, or more independent than I want him to be.

“He wants to be like his peers. He doesn’t even know that he has Down syndrome. When he hears me say that, he goes, ‘I don’t have that.’”

If you go

Jared’s Family Dinner

What: Mention Jared’s name while dining at Not Your Average Joe’s, and 15 percent of your food bill will go to Cure ATRT Now.

When: Tuesday, June 11, all day

Where: Not Your Average Joe’s, 1 Market Square, Newburyport

Jared’s Cure AT/RT Evening

What: Fundraising event for Cure ATRT Now featuring music by Acoustick and raffles

When: Thursday, June 13, 6 to 9 p.m.

Where: Port Tavern, 84 State St., Newburyport

For more information about Jared’s fundraising efforts, visit www.facebook.com/JaredsSweet16Dream. For more on Cure ATRT Now, visit www.cureatrt.org.