Lunch Date Leads to Fundraising Extravaganza

Front Row (L-R) Tonya Lambert, Diane Barksdale, Jamileh Kamran, Kathleen Sullivan, Lesley Oslica. Back Row: Vickie Glenn, Stephenie Pyle, Katherine Faulk, John Prentiss. Committee members not pictured: Cecelia Blasier, Melissa Coven, Sarah Henry, Tricia Rhodes, Ramona Ball

It was a rather normal lunch date: food, conversation, camaraderie. Then the conversation started to shift. Lesley Oslica and another parent with a child with Neurofibromatosis (NF) started talking about doing something big to make a difference for families with NF.

“We decided at that moment that it was time to do something about it rather than just complain about it,” said Lesley, echoing sentiments from her favorite Gandi quote, “Be the change you wish to see in the world.”

They wanted to see change in Arkansas.

They wanted their community to be more aware of this genetic disorder that affects 1 in 3,000 births and causes tumors to grow anywhere in the body.

The idea of a “fashion show” was tossed around. Lesley wasn’t so sure. She was used to lacing up her running shoes and doing marathons for the NF Endurance Team, but fundraising fashion shows? “I was against it, because I know nothing about fashion or how to put on a fashion show,” said Lesley.

The two parents left the meeting and made a few phone calls.  Lesley found the feedback surprisingly promising. A designer was willing to help organize and execute the details. For two years the fashion-themed event generated approximately $40,000.

“We are blessed in Arkansas to live in such a philanthropic area,” said Lesley. “The people, businesses, and media in our state are very giving.”

But, in typical Oslica style, Lesley wanted to do something a touch different for the third annual event– something to make it bigger and generate even more excitement.

On Thursday, Sept. 16, 2010 there will be the first edition of “Dancing with OUR Stars“ at Chenal Country Club to raise money for the NF Clinic at Arkansas Children’s Hospital and the Arkansas Chapter of the Children’s Tumor Foundation.

The mission of the Children’s Tumor Foundation is to provide resources for families living with NF, facilitate NF research, administrate an NF Clinic Network for participating clinics, and raise awareness of NF.

Think red carpet, cocktails, dinner and dancing. Two local media celebrities — Christina Muñoz and Jason Pederson —  along with four community leaders and NF Ambassadors — Dr. Rolla Shbarou, John Prentiss, Leslie Godwin and Scott Landers — will participate as ‘Our Stars’ in the evening.

The stars will partner with dance professionals from Arthur Murray’s Dance Studio. You can vote for your favorite star at www.ctffarkansas.org.

Putting on an event of this nature takes time, energy, planning and patience. “It’s like running a marathon – you work and work and then once it’s over, there is a great sense of accomplishment,” said Lesley, an NFE veteran and team captain for several events.

It’s symbolic to living with NF, she said, because there are a lot of hurdles to get over, but determination, courage and friendship can help you along the way.

And while the prep work can be grueling and demanding, Lesley wants nothing but jubilant memories for attendees.

“Our committee is also planning a special surprise for our guests; we are doing a group evolution of a dance routine,” said Lesley. Her secret? “None of us can dance!”

It’s part of the atmosphere she hopes the evening will imbue– lighthearted and cheerful fun. “We want everyone to enjoy themselves while we raise money for something we are all passionate about – changing the face of NF in Arkansas!

Tickets are $100. For more information, please contact Lesley Oslica at (Enable Javascript to see the email address) or 501.579.2710.

Dancing with Our Stars — Red Carpet for Research

Read more about this fabulous event organized by NFE member and team captain Lesley Oslica on next Monday’s blog entry.

Family Puts the FUN in Fundraisng with Kids Carnival

A.J. Perfetti wanted to do something to help his little sister. At age 11, A.J. couldn’t take away Julia’s MRIs, doctor appointments, or make her NF go away, but he could help her have fun and play with her friends. He asked his parents, Laura and Anthony, if he could help create a fair, a carnival, a party for kids.

They could not help but to say yes.

“You know how out of control NF feels, and he loved helping at our dinner auction, but he wanted to do something himself,” said Laura.

A.J. got right to work with his dad, Anthony. They built a lot of the games and used a ladybug theme in honor of Julia, affectionately nicknamed “Ladybug.”  The Perfetti’s included carnival classics such as a dunk tank and good eats: cotton candy, popcorn, hamburgers, hot dogs, icecream. Representatives from the New York Islanders hockey team brought a bounce house, a slap shot, and vouchers for future games. In addition, there was a DJ, face painting, tie-dye station, raffles and pony rides. Ed Huether, an adult living with NF from Long Island, N.Y., blew up animal balloons for the kids all day, including one just for Julia — in the shape of a ladybug.

This year’s event on July 17th marked the second Carnival for NF in Glen Cove. A.J. spent the majority of the day in the dunk tank and Julia worked the potty toss — a game where one throws a roll of toilet paper into a toilet seat. All of A.J.’s friends came and worked the  games for the smaller children. They handed out prizes and even helped clean up.

To make the carnival just a touch educational, the Perfetti’s placed signs at every game station with one fact about NF. “The more educated people are, the easier I can make the path Julia is on. I think understanding NF is so important for our community as she’s growing up. I think it helps people understand her and her life and her behavior better.”

“More important than the $5,000 raised at the event,” said Laura, “was the feeling it gave A.J., Julia and their friends–they can do something to help others even at a young age.”

One of the most memorable moments  for the Perfetti’s was seeing the carnival participants wearing the tie-dyed Team Ladybug shirts around town. “All my kids get so excited to see them walking down the street or in the ice cream place or wherever, ” said Laura. “It makes me teary, but they get so happy.”

To learn more about Team Julia Ladybug, click here.