One of Open Your Hearts Volunteers, Eve Comstock, has graciously organized a Bake Sale, scheduled for Saturday, December 12^th at 12:00 at the Caruso/Bode residence.  Open Your Heart will be raffling a lottery tree and Eve will be raffling off the opportunity to win a cake a month for one year!  M. J. McCabe will be selling holiday trees and wreaths.  Stop by for a delicious treat to satisfy your sweet tooth!

Laura Whaley, Treasurer of Open Your Heart, is named “Person of the Week” – check out the article http://www.zip06.com/article/20091126/NWS10/311269675/-1/zip06details&town=Guilford&template=zip06art.

Suzy Monaco, President of Open Your Heart, is named “Person of the Week” –  check out the article:  http://www.zip06.com/article/20091126/NWS10/311269849/-1/zip06details&town=North-Branford&template=zip06art

Get you raffle tickets at the community center and put them in our bucket!!  For every ticket Open Your Heart gets $1 toward the Caruso/Bode project!  Check out our pretty pink heart tree!

The North Branford Police Union has done so much to support Mary, Sam and Ally throughout the years.  Today, they presented a check in the amount of $$$$ to be used toward the renovation.  Thank you North Branford Police Union!!

The Tag Sale was a huge success!  The total proceeds were $$$$.  Open Your Heart, Help the Community would like to give a special thanks to (children’s church group) for all their help.

Open Your Heart, Help the Community will be hosting a tag sale on Saturday, October 23 and Sunday October 24^th!  Please stop by the Caruso/Bode residence to support the tag sale, grab a few of Mary’s famous cookies, and check out the plans for the renovation.

car wash details here

The New Haven Register (nhregister.com), Serving New Haven, CT

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Stars glow in Branford for Friedreich’s event

Monday, October 5, 2009

By Pamela McLoughlin, Register Staff

BRANFORD — It wasn’t quite the Tribeca Film Festival, Tony Awards or the Oscars, but a group of stars converged quietly at the Owenego Inn recently to receive a lesser-known, but personally important honor: the first Friends and Allies Award from the Friedreich’s Ataxia Research Alliance.

The connection that brought acclaimed actress Mary Stuart Masterson, her husband, actor Jeremy Davidson (who appears in the TV series “Army Wives”) and screenwriter and actor Jayce Bartok to Branford is two sisters who are Southern Connecticut State University students and have Friedreich’s ataxia, a progressive neuromuscular disease.

The sisters, Sam Bode, 22, and Alex Bode, 19, formed a close friendship with the stars after they met with Masterson to tell her what it is like to live with the rare disorder. Masterson wanted the everyday information for what would become the critically acclaimed, award-winning independent film “The Cake Eaters,” in which Masterson makes her cinematic directorial debut.

A very pregnant Masterson, who blended with the crowd at the seventh annual Find A Cure dinner at the Owenego Inn, said the Bode girls gave invaluable insight to actress Kristen Stewart, now of “Twilight” fame, in playing the main character, Georgia. Georgia is a high school girl affected with Friedreich’s who decides that given the progression that has her on the verge of needing a wheelchair full time and perhaps a limited life span, she wants to experience a sexual encounter. She does so with a local young man nicknamed “Beagle.”

Masterson filmed the interview she did with the Bode girls, in which she asked them some “very personal” questions and even had them get out of their wheelchairs to demonstrate how they walk. She then sent the interview to Stewart.

“It gave her (Stewart) confidence that she could have an attitude” in playing the character, Masterson said. “It showed her the kind of resolve they have and the ferocity with which they live their lives.”

The Bode women are very different from each other. Sam, a senior, is a tomboy majoring in communications with a concentration in video editing; Alex, who is more in touch with her feminine side, is a sophomore majoring in social work.

Both definitely have more confidence and attitude than many their age who don’t have any extraordinary obstacles.

Sam Bode managed on her own to get her “dream come true” and do a summer apprenticeship at ESPN, while Alex Bode volunteered with patients all summer at Hospice. She hopes to specialize in palliative social work, a direction inspired by the passing of her grandmother, Carmella Caruso.

“I was more than happy to help… It was an awesome experience,” Sam Bode said. “She (Masterson) was an open person — very open-minded.”

Sam Bode said Kristin Stewart really “hit the nail on the head,” in portraying a young woman with Friedreich’s ataxia, neither overplaying nor underplaying the part.

“For a minute there, I thought Kristn Stewart” had Friedreich’s, Sam Bode said.

Friedreich’s ataxia is a rare genetic neurological disease that causes lack of coordination, muscle weakness, slurred speech, excessive fatigue, heart problems and more, while mental abilities remain intact. The disease affects about 7,000 people nationwide. Life expectancy is shortened, but great strides are being made in treatment and stopping progression, with the goal being a cure. The Bode girls were each diagnosed at about age 8.

The poignant and critically acclaimed 2007 film, an official selection at the Tribeca Film Festival, takes place in a rural area and spotlights relationships in he lives of two families that are intertwined on many levels. The focus is the relationship between Georgia and Beagle, also a soul who had been through a lot emotionally during his young life, including taking care of his ill mother.

Screenwriter Jayce Bartok, who also was at Owenego to accept the award on behalf of “The Cake Eaters” team, said he wanted to write a piece to show the struggle of a person with impaired physical mobility who also has the mind and spirit of someone without physical limitations. He was inspired by his mom, Leann, a vibrant painter and filmmaker who spent her last years in a wheelchair because of a form of ataxia resulting from diabetes.

Bartok said he went to the New York City public library to research ataxias and was drawn to Friedreich’s, a rare disease that few have preconceived notions about. and decided the character would be a young woman coming of age who is determined to explore life, love and sensuality. He also wanted to show that people with disabilities find love.

And that is a subject close to the heart of Sam and Alex Bode’s mom, Mary Caruso, who was also interviewed by Masterson about dealing with the disease, especially in terms of “letting go,” when Friedreich’s by its very nature creates dependence. Unlike Georgia’s mother in the film, who struggles with her daughter’s quest for life experiences and appears in denial, Caruso has always taught her girls to pursue their dreams and met the diagnosis head-on by becoming becoming informed and immersing herself in the goal to find a cure. Caruso is a founding member of FARA.

Caruso’s favorite character in the movie is Beagle, the man who hooks up with Georgia, because he represents “hope for my kids,” she said, in that he cared for her and saw past the disability.

The Bode women, aside from being smart and dynamic, are both attractive, yet they haven’t done a lot of dating, Caruso says. She believes that if society looked at people all the same and could see past the disease, they would be dating more. Society’s biases involve many areas aside from dating, Caruso said, noting that sometimes when she’s out with her daughters people talk to her about them as if they’re not there.

“I think they (society) look at them like lesser human beings,” Caruso said. “I explain to them that it’s up to them to make some changes in this world.”

Caruso, who along with her daughters has become friends with Masterson and her husband, said Masterson interviewed her and the girls separately because the questions were so personal. Caruso said the film, released earlier this year, has helped heighten awareness of the disease and helped FARA make connections. She and the girls were at Tribeca for the premiere and also visited the movie set in New York.

Masterson, a veteran actress of stage and screen, is best known for her starring role in the 1991 film, “Fried Green Tomatoes” and for the role of Joon, the mentally unstable love interest of actor Johnny Depp in the movie “Benny and Joon.” She also has hosted “Saturday Night Live.”

Masterson said she was drawn to the screenplay of “The Cake Eaters,” because it “has a nice heart to it,” and when she contacted FARA to find someone with the disease to interview, Caruso responded and said she and her girls would be willing to travel to New York. Masterson said she wanted details — the type of stuff that would be hard to find in a book — including what the transition from walking to being in a wheelchair was like.

Masterson said she’s become close to the Bodes and Caruso — and she’s hooked on Caruso’s home-baked cookies — so she wanted to come to the fundraiser to show support. She also was honored to receive the award.

“The work they do is so amazing,” she said, noting FARA has a large, solid infrastructure, but also inspiring individuals like Caruso who have “moved mountains” to raise awareness and money toward finding a cure.

“I’m always reminded of that when I meet Mary, Sam and Alex,” Masterson said. “They’ve made a real impact. They’re amazing.”

Bartok said after five or six years e-mailing scripts to many of those at FARA’s fundraising dinner, he wanted to “connect” with those who helped make the film so powerful, including the Bode woman, he said.

“It’s a good film, it’s something we’re all proud of,” said Bartok, who also had a part in the film as Beagle’s flaky brother.

Alex Bode said she was touched that Masterson, her husband and Bartok came to the fundraiser because it “shows they really care about us.”

Alex Bode, who also gave a thumbs up to the movie, said that while she agrees with her mom that people with disabilities are treated differently, she has faith in the old saying, “There’s someone out there for everyone.”

“I’ll find the right person,” she said.

To donate to FARA or find more information, go to www.curefa.org.

URL: http://www.nhregister.com/articles/2009/10/05/news/shoreline/b1-ctmovie.prt

© 2010 nhregister.com, a Journal Register Property

The New Haven Register (nhregister.com), Serving New Haven, CT

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Mom tackles 200-mile bike trip for love

Monday, April 13, 2009

By Pamela McLoughlinRegister Staff

Mary Caruso says she was more than a little nervous when she set out on a 200-mile bicycle trip to raise money and awareness of a progressive neurological disease that has robbed her two college-age daughters of muscle strength and coordination.

But the 52-year-old mom is happy to report, “I did it, I’m back and I’m alive.”

Caruso faced some of her biggest fears: flying, bicycling, helmets and traffic to fly out to Oregon and from there pedal to Seattle as part of an organized fundraiser, Ride Ataxia 3, in which 66 people made the four-day ride to a fitting destination, the National Ataxia Foundation conference.

Caruso raised $5,000 on her own, and passed out hundreds of paper hearts with positive messages along the way. As a group, more than $230,000 was raised.

It was all for the love of her two daughters, Sam Bode, 22, and Alex Bode, 18, both students at Southern Connecticut State University who suffer from Friedreich’s ataxia, a rare genetic neurological disease that causes lack of coordination, muscle weakness, slurred speech, excessive fatigue, heart problems and more, while mental abilities remain intact.

The disease affects about 7,000 people nationwide.

The two young women were diagnosed at about age 8 and have been using wheelchairs for many years.

Caruso said she took on the challenge because she wanted to feel what it was like to wake up every day being challenged as her daughters are every day.

Sam Bode said that gesture touched her, and that when her mom was gone, the mother/daughter roles were flip-flopped because she and her sister worried daily about Caruso being hydrated and staying uninjured.

Sam Bode said she now realizes what her mother goes through every day worrying about her.

“I think (the trip) was very emotional and showed her true strength,” Sam Bode said.

Caruso said she couldn’t come close to what her daughters face, as physically getting out of the bed each morning is a challenge for them, but she feels that she at least got “a taste of true challenge.”

“I’m very proud that she did this for me and very happy that she enjoyed it,” Alex Bode said.

Three out of the four days, it was pouring rain and by the end of the ride, Caruso was soaked to the bone. The first day was 60 miles and, after 52 miles and several flat tires caused by a gravelly road, Caruso was picked up. On the third day, they were slated to go 68 miles, but she made 54. She took three falls, as there were obstacles, including railroad tracks that were tricky to navigate and at one point, a 21 percent grade hill she walked up, pushing the bike. At that point, she was reminded of other’s challenges again when an ataxia sufferer on a trike started rolling down the hill and she stopped it, as did others.

Many times, she was “afraid, tired, sopping wet,” and cried. The girls downloaded music on her iPod for the ride, but she quickly found listening to music wasn’t going to work.

She remembers a really tough ride on a road with heavy tandem logging truck traffic and a drop off on the other side of 20 feet with no guardrails. A fellow cyclist talked Caruso through it, saying, “ Don’t stop pedaling, keep on track. Keep on going.”

But while she felt terror along the way, Caruso also was struck positively by the group camaraderie. “It was a real good feeling.”

Caruso in 1998 helped found Friedreich’s Ataxia Research Alliance, a nonprofit organization promoting research for treatments or cure. She holds a local fundraiser for the cause every year.

Caruso’s daughters, who live on campus and return home to North Branford on weekends, help their mother with her work to raise research money and awareness of the disease.

Caruso, who wasn’t a bicyclist until now, lost 22 pounds from September, when she began training for the trip, to mid-March, when she left. She lost five more pounds on the road.

To find out more about the trip or follow the inspirational heart campaign, visit Caruso’s blog at www.openyourheart-marycaruso.info.

For more about Friedreich’s ataxia, or to contribute money, visit www.frda.org.

URL: http://www.nhregister.com/articles/2009/04/13/news/a3-nebiketrip_mon.prt

© 2010 nhregister.com, a Journal Register Property