Tags Posts tagged with "Donna McCauley"

Donna McCauley

Girl Scouts, Girl Scout alumnae and volunteers will once again help out at the event. Image courtesy of Jenn Intravaia Photography

By Ernestine Franco

I never need a reason to eat pancakes. In case you do, head over to the 4th annual Butterfly Breakfast for a Cure at Applebee’s, 355 Route 25A in Miller Place on Saturday, Oct. 13 at 8 a.m. and eat pancakes to help find a cure for the worst disease you’ve probably never heard of: epidermolysis bullosa. Young people who suffer from this disease are called “butterfly children” because their skin is so fragile it blisters or tears from friction or trauma. This rare genetic disease affects 1 out of every 20,000 births in the United States. Currently, there is no treatment or cure.

Proceeds from this fundraiser will support DEBRA of America, an organization that provides assistance and education to families with children born with this genetic condition.

Rocky Point resident Donna McCauley is often associated with this event, but it is her daughter, Kelly, who is the driving force for this fundraiser. “It all started when I was a junior in High School with this out of the world idea to host a fundraiser and create more awareness for the disease that affects both my mom and my uncle. Doing this event every year is just a small act that I can do to repay my mom for showing me what being strong is like, and not letting ANYTHING bring you down,” said Kelly.

 As in the past, former and current members of Donna McCauley’s Girl Scout troop will volunteer their time as servers for the breakfast. In addition to a breakfast of pancakes, sausage, scrambled eggs and a beverage (coffee, tea, juice or soda), there will be a raffle auction with fantastic prizes. So come and “enjoy a short stack for a tall cause.”

Tickets are $10 for adults and $7 for children 10 and under. Tickets can be purchased online at www.debra.org/butterflybreakfast. To pay by check, email Donna at [email protected] For more information, please call 631-821-6740.

Brianna Florio, on right, was honored by the Sound Beach Civic Association and president Bea Ruberto, on left, for her community involvement. Photo from Sound Beach Civic Association

A Sound Beach Girl Scout recently solidified the organization’s highest honor by helping children who live in a temporary shelter feel a little more at home.

Brianna Florio, an 18-year-old Sound Beach resident and a member of Rocky Point Girl Scout Troop 2945, has been working since last year to better the lives of 16 children who reside at Halo House in Sound Beach, a shelter for families in crisis.

While staffers within the home — which gets its funding from the Department of Social Services — do all they can to help the four families currently living under one roof get their cases under control, find employment and locate more permanent housing, helping young children adjust to their new environment is a constant challenge.

Brianna Florio will be receiving her Gold Award next month after working with children at Halo House in Sound Beach to paint a mural to make the place feel more like home. Photo from Brianna Florio

So when it came time to pick a community outreach project in summer 2016 to fulfill the requirements for her Gold Award, the Rocky Point High School graduate, who learned of the shelter from one of her troop leaders, set her sights on making it more kid-friendly.

“I knew this would be a good fit for her,” said Donna McCauley, her troop leader who first became aware of the Halo House through St. Louis de Montfort R.C. Church in Sound Beach. “Brianna is very dedicated, has a very generous spirit and is always ready to help anyone in need. It also gave her a way to express herself creatively, which she’s very good at.”

Florio utilized her artistic talent and painted a large mural on the wall in the shelter’s dining room depicting animals having a tea party, installed a bench to be placed in the property’s yard and hosted a toy and book drive at her high school. Through that event, Florio brought multiple boxes of donated entertainment for children of different ages to the Halo House — items that are sorely needed, according to shelter manager Joe Pellegrino.

“[Brianna] definitely helped bring the kids a sense of community within the neighborhood of Sound Beach,” he said, adding the children in the shelter were eager to be involved in her mural project. “The younger ones would wait for her to come, and when she got here, they would say, ‘Can you paint a snake? Can you put a hat and bowtie on it?’ It betters the children’s state of minds when they’re at the shelter, because they get a sense that it’s a home and not just a place they’re forced to live in.”

Pellegrino said the mural has become a center of pride in the home and is even used as an educational tool to teach the children about the different animals depicted.

“It really warmed my heart to see the kids and their smiling faces and just how excited they were about it,” Florio said of the mural. “It was really nice to see it all finished, because I didn’t think I was going to be able to do it.”

She will officially receive her Gold Award from the Girl Scouts of Suffolk County council in December.

Although it was an independent project for the Girl Scout, Florio was able to acquire paints and various supplies through local donations, like from Costello’s Ace Hardware of Rocky Point. She also received support from her school district, where she was a member of the Be a Nicer Neighbor Club, a group that cooked for the homeless and performed songs at senior citizen homes during the holidays.

“Brianna is very dedicated, has a very generous spirit and is always ready to help anyone in need. It also gave her a way to express herself creatively, which she’s very good at.”

—Donna McCauley

“I think if anybody is deserving of a Gold Award, it’s Brianna,” Rocky Point High School Principal Susann Crossan said. “What sets her apart from everybody else is she has a constant concern for other people. She’s been involved in so many activities within the high school that involve giving back. She was an extremely well-rounded and kind student.”

Florio’s project was also no surprise to Nancy Kloska, the director of an aftercare program for children at Mount Sinai Elementary School, where Florio currently serves as a mentor helping students with homework, playing games with them and leading fun activities.

“She’s warm, approachable, responsible and the kids really love interacting with her — Brianna always has a large group around her,” Kloska said. “I think she just brings out the best in the kids and is such a positive role model. I can’t say enough good things about Brianna. I think she’s wonderful.”

Florio was bestowed a certificate of appreciation by elected officials and community members for her Gold Award efforts during a Sound Beach Civic Association meeting Nov. 13. Civic president Bea Ruberto later said in an interview that Florio is a shining example of upstanding youth in the community.

“We were so proud to honor Brianna at our meeting — she’s very community-minded and is always there to help and give back,” said Ruberto, pointing out that Florio has helped with the civic’s pet adoption efforts and contributed a drawing in honor of the civic’s 40th anniversary. “We often hear about all the kids who behave badly and do this or that, and we really make an attempt in the civic to showcase the good kids. She’s a very fine young lady.”

Florio is currently pursuing a career in computer science and game programming as a freshman at Stony Brook University.

Kelly and Donna and McCauley held the third annual Butterfly Breakfast for a Cure fundraiser at Applebee’s in Miller Place. Photo by Kevin Redding

By Kevin Redding

A mother-daughter duo from Rocky Point raised thousands of dollars last weekend to help those with epidermolysis bullosa — a rare and painful skin disease that hits close to home.

Donna McCauley, who was born with the genetic condition that causes the skin to blister and tear at the slightest friction, and her daughter Kelly, a former Girl Scout, raised $4,000 during the 3rd Annual Butterfly Breakfast for a Cure fundraiser Nov. 4 at Applebee’s in Miller Place. More than 100 locals gathered at the restaurant to eat pancakes, take part in a Chinese auction with huge prizes for adults and kids and learn about “EB,” which is largely considered “the worst disease you’ve never heard of” and affects one in 20,000 births in the United States.

Donna McCauley auctioned off prizes to raise more funds. Photo by Kevin Redding

All proceeds are going toward Debra of America, a New York City-based nonprofit that provides assistance and support to families with children born with the disease through funding research for a cure and treatment initiatives.

As a teenager, Donna McCauley, whose parents were told she was going to die young from this “genetic anomaly,” made a conscious choice not to let EB — which turns run-of-the-mill activities like getting out of bed, taking clothes on and off and showering into daily struggles — define her life. Instead, she strived to be a role model for other “butterfly children,” a term given to young people with the disease, as their skin is said to be as fragile as a butterfly’s wings.

She became involved with Debra when she was 16, which opened her eyes to a community of others like her, and made sure to get her license, go to college and pursue jobs, vowing “not to be afraid to live” despite her condition.

“I can sit in the corner and rock and be sad, or I can get up and do what I need to do,” said McCauley, 49, who lives in constant pain and must wrap her wounds in bandages each day in order to prevent infections. She is currently in a clinical trial for a new treatment drug by Amicus Therapeutics that helps mend her wounds. “Things like this fundraiser give me hope that people become more aware, and more money is raised. Each day they are getting closer to finding a treatment and a cure.”

Although McCauley has been the face of the event since it started in 2015, the Rocky Point resident who referred to herself as a professional volunteer and remains a coordinator with local Girl Scout troops, pointed to her daughter as the real driving force behind the fundraiser.

“I can sit in the corner and rock and be sad, or I can get up and do what I need to do.”

— Donna McCauley

“One of the things that strikes me the most is that Kelly has a sense of empathy and compassion that I don’t think you can teach,” McCauley said. “I’m so proud of her initiative to make other people more aware of disabilities. She has always been the person who includes the one that isn’t included.”

Kelly McCauley, 19, a current student at Dominican College in Orangeburg, New York, started advocating for EB support as a sophomore at Rocky Point High School by selling bracelets decorated with butterflies to peers and administrators and ended up raising $500 for Debra. This prompted her to want to step things up a notch, and she soon went door to door to local businesses in search of a venue for her own bigger and better fundraiser.

McCauley’s daughter said growing up and witnessing her mom’s perseverance encouraged her to get involved in the first place.

“I saw just how strong she was and how much it took for her just to wake up every day,” she said. “She’s definitely the strongest woman I know. This disease is so much on a person. You wake up and you hurt no matter what. But she still gets up, she goes to church, she volunteers, she works as a religion teacher — she does all these things even though she’s always in some sort of pain.”

McCauley’s determination to live a normal life has served as a foundation for her younger brother, Bob Newfield, a Setauket resident who was also born with EB.

“It’s tough — what would take most people 15 minutes to get ready for work in the morning takes me an hour,” Newfield said. “But there are other things in life that are tough too, so you just have to deal with the cards you’re given. It’s such a rare disease and doesn’t get the funds it needs.”

Local residents, like Miller Place resident Joan Lowry, on right, attended the fundraiser. Photo by Kevin Redding

His wife, Marianne, explained how it’s been to observe the disease firsthand.

“His mind wants to go, go, go, but his body holds him back at times — but those with it are the strongest people I know,” she said. “They don’t really let anything get them down. Bob puts on a happy face every day even though his feet kill him; many days are hard.”

Residents that donated to the cause by purchasing raffle tickets ranged from those living with the disease to others who had never heard of it before.

Bonnie Harris, who grew up in Port Jefferson, said she and a majority of her family have the condition.

“The disease itself doesn’t get better when you get older, but you get better as you get older,” Harris said. “You’re not as clumsy when you’re falling and you’re able to take care of it better. My mom, who had it, always said, ‘You can do anything you want to do — you just have to work harder than everybody else.’”

Miller Place resident Joan Lowry heard of the fundraiser through St. Louis de Montfort R.C. Church in Sound Beach, a parish where McCauley is extremely active.

“There are too many people who fall in the cracks and need the help,” Lowry said, “and that’s the reason I’m here.”

If you wish to make a contribution, visit Debra.org/butterflybreakfast2017.

A local family came out for breakfast to support a great cause. Photo by Jenn Intravaia Photography

By Ernestine Franco

More than 160 people started their day recently at the Butterfly Breakfast for a Cure fundraiser held at Applebee’s in Miller Place.

The $4,000 raised on Saturday will benefit DEBRA for America, an organization that provides assistance and education to families with children born with epidermolysis bullosa (EB). Young people who suffer from this disease are called “butterfly children” because their skin is so fragile it blisters or tears from friction or trauma.

After the event, Donna McCauley, who organized the fundraiser, expressed her gratitude to everyone who participated in the fundraiser, “When [my daughter] Kelly asked to take on a fundraiser for DEBRA of America, we were so proud of her for taking such an interest to give back to this wonderful organization that has supported our family for so many years. Living with EB is not easy and often people ask me how I manage to be so involved in so many things. All of my servers worked out of the goodness of theirs hearts and for service hours and did a great job. In case it wasn’t obvious to all yesterday by [the number of people who came to] Applebee’s … It is because of the love and support of my fantastic family and a group of friends like all of you. I am truly humbled by the turnout.”

If you would like to donate to help find a cure, please visit www.DEBRA.org.