When Caring Is More Than Skin Deep

By Nancy K. Crevier

Through the efforts of Reed Intermediate School fifth grade teacher Gina Swanson and her family, parents Bob and Maria DeCesare of Trumbull and sister Lisa Tilson of Stratford, Zumba fans will be able to “cha-cha-cha” for a cause, Friday, September 10, when the American Society For Scleroderma Research (ASFSR) hosts a Master Zumba Class fundraiser at the school on Trades Lane. The DeCesares are board members of the group.

Scleroderma is an autoimmune disease that affects 300,000 people in the United States, according to the ASFSR website. Increased production of collagen causes the skin to thicken, and replaces normal skin structure with scar tissue. Scleroderma can affect blood vessels, lungs, kidneys, the intestinal tract, and other organs, and is a life-threatening disease, with no cure.

The mission of ASFSR is “To find the cause and the cure for scleroderma and to educate the public about this disease,” and it is to this end that Ms Swanson and the ASFSR foundation hope to draw anywhere from 100 to 200 participants for the September 10 event.

ASFSR was founded in 2004, said Maria DeCesare, and since then has hosted fundraisers such as Kentucky Derby parties, sock hops, December breakfast with Santa, a 5K walk, and motorcycle ride events that have enabled the foundation to donate more than $140,000 to date to support scleroderma research. “Research has improved treatment and survival rate, but there is still not a cure,” said Ms DeCesare.

While they had heard of scleroderma through medical news and television, and as a hairdresser Ms DeCesare is aware of skin disorders, it was not until a good friend’s daughter was diagnosed with the debilitating disease that they became activists for the cause, she said. “We had known Joe LoSchiavo for years. My husband and Joe went to high school together, and we were double-dating 45 years ago,” Ms DeCesare said. So when Mr LoSchiavo founded ASFSR, they were happy to come on board. Mr DeCesare currently serves as vice president for the foundation, and Ms DeCesare is the foundation’s recording secretary.

“Joy, Joe’s daughter, is a young woman with two small children, who is seriously ill with scleroderma,” Ms DeCesare said. Another board member is afflicted with the autoimmune disease, as well, so the DeCesares feel a personal connection to raising awareness, and funds, for scleroderma research.

“This is the first time we are using a Zumba class as a fundraiser,” said Ms DeCesare. “I went to a master class in June, at Reed Intermediate, led by Jordana Bross Bell, and afterwards I asked her if she would consider doing a class as a fundraiser for our foundation. She was very pleased to do so,” she said.

Zumba is a high-energy dance and fitness program that combines Latin and international dance beats for a fun cardiovascular workout, and has been a popular addition to many people’s exercise regimes in recent years.

“Jordana is our featured instructor,” said Ms DeCesare. Ms Bross Bell trained as a ballet dancer and has been a guest artist with the American Ballet. She is a choreographer at her alma mater, Sacred Heart University in Fairfield, and encourages the use of dance as an element of staying fit. “We are very happy she is doing this event for us,” said Ms DeCesare.

“Since I work at Reed Intermediate School on a daily basis,” said Gina Swanson, “it seemed like the perfect place to hold the fundraiser. We have that big, beautiful stage, and that great air-conditioned space.”

The fundraiser Master Zumba Class is open to men and women, ages 15 and up. It is not necessary to have previous Zumba or dance experience. Wristbands, required for entry into the gymnasium, can be purchased online at asfsr.org, for $20, or by calling 203-261-0795, prior to September 10, or purchased for $25 at the door, the night of the event. Doors open at 6:45 pm, and the “party” begins at 7:30 pm, until 9 pm.

“Transform your mind, body, and spirit,” reads Ms Bross Bell’s website, zumbawithjordana.com. The ASFSR fundraiser offers the opportunity to transform someone else’s mind, body, and spirit, as well.

For more information on scleroderma and the ASFSR foundation, visit asfsr.org.