Jumonvilles to be honored by Cystic Fibrosis Foundation
Dan Jumonville lost a family member to cystic fibrosis. His nephew Khristopher Jumonville lost his battle with the disease in 2004 at the age of 27.
As a way to try to fight against the disease, Dan and his wife, Carla, “were participating in just about everything that came along that had ‘cystic fibrosis’ attached to the donor line,” Dan Jumonville said.
In the years after, a granddaughter, now 17, was diagnosed with cystic fibrosis as an infant, the Jumonville family decided to create its own fundraising event.
Carla Jumonville and her daughter M’Elaine Booth founded the Bunny Hop Brunch, an annual springtime fundraising event featuring a children’s fashion show, silent auction, photos with the Easter Bunny and games.
“We started it about 10 years ago. We wanted to do something that involved children” as a way to educate about being involved in a good cause, Carla Jumonville said.
The event brings in about $25,000 for cystic fibrosis research every year, she said.
“It’s gone over quite well,” Jumonville said.
There are close to 100 children in the fashion show, and parents, grandparents and other family members love to be there, she said.
Dan and Carla Jumonville and their family will be honored this year by the Louisiana Chapter-Baton Rouge regional office of the Cystic Fibrosis Foundation for their longtime volunteerism and fundraising work at an upcoming event.
The 10th annual Price LeBlanc Lexus Baton Rouge Wine Opener will be held Sunday evening, beginning at 7, at Sullivan’s Steakhouse, 5252 Corporate Blvd.
The event offers fine wines, gourmet cuisine and music by Ned Fasullo and the Fabulous Big Band Orchestra.
Those who purchase “VIP” tickets can also attend a reception that begins at 6 p.m.
Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system.
Today, some 30,000 children and adults in the U.S. live with the disease, caused by a defective gene and its protein product, that causes the body to produce a thick mucus that clogs the lungs and leads to life-threatening lung infections, according to the Cystic Fibrosis Foundation, at http://www.cff.org.
The disease also affects the body’s ability to break down and absorb food.
In the 1950s, most children with cystic fibrosis died before reaching elementary-school age, the foundation said.
Today, with advances in research and medical treatment, many people with the disease can now expect to live into their 30s, 40s and beyond, it reports.
The Cystic Fibrosis Foundation, based in Bethesda, Md., is a leader in the search for a cure for cystic fibrosis.
“We fund more CF research than any other organization, and nearly every CF drug available today was made possible because of foundation support,” says its website.
And there have been breakthroughs in treatment, said Erin Achberger, executive director of the Cystic Fibrosis Foundation in Baton Rouge.
This year, the U.S. Food and Drug Administration approved a medicine called Kalydeco, taken in pill form, for the treatment of a segment of the CF population with a certain mutation of cystic fibrosis.
The mutation is present in about 4 percent of the CF patient population in the U.S., reports the Cystic Fibrosis Foundation.
The drug, developed by Vertex Pharmaceuticals, “dramatically improves lung function ... and helps patients gain weight — all key clinical indicators of CF,” according to the foundation.
Vertex Pharmaceuticals is also studying the combination of Kalydeco and another new drug in clinical trials for the treatment of people with the most common mutation of cystic fibrosis, the Cystic Fibrosis Foundation reports.
M’Elaine Booth’s daughter, Claire Booth, a junior at St. Joseph’s Academy , is doing well, managing the CF through medications, and is a busy, active teen, said her grandparents, Dan and Carla Jumonville.
Claire has a fraternal twin brother, Ben, who is a junior at Catholic High, and an older sister, Kendall, who attends LSU. Claire’s siblings don’t have CF, their grandfather said.
“She really is a fighter ... which is a good thing, with this illness. She has a really fun personality,” Dan Jumonville said of Claire.
Claire Booth, who has always lived with cystic fibrosis, said she follows a certain routine for when she’s not feeling well.
She’ll wear a type of medical vest that delivers high-frequency oscillations to the chest wall, to help her cough and clear her airways.
She’ll also use a nebulizer, a machine-driven type of inhaler that lets her breathe in medicine delivered in a fine mist, and she’ll take several oral medicines, as well.
The entire treatment process takes about an hour, and Claire Booth said “when I do it, I usually sit around the TV with my family.”
When she’s not busy with school and school work, Claire Booth said she likes to hang out with her friends. Kayaking on the LSU lakes and baking are two other favorite past-times, she said.
In 2003, the Jumonvilles were part of the planning committee for the launching of the Wine Opener event, the major fundraiser that’s held annually here and in Lafayette.
They and other family members have gotten involved in other ways, as well, in such Baton Rouge area events as the Jim Crane State Farm Highland Open, Hollingsworth Richards Bert Jones Golf Classic and the Cycle for Life fundraisers for the Cystic Fibrosis Foundation.
“They make so good use of every dollar,” Dan Jumonville said of the foundation.
Claire Booth talks frankly about the uncertainty that such an illness brings.
“I never know when I might get pneumonia,” she said.
But this is her outlook on living with cystic fibrosis: “When you think about it, it’s kind of a gift. I get to live my life to the fullest.”