Grapes & Grain event to fight Cystic Fibrosis on Astini News
Verna Bieber knows her calling in life, and it's to make a mark when it comes to ridding the world of the horrible disease known as cystic fibrosis.
Bieber lost her best childhood friend to the disease as she awaited a lung transplant. That friend, JoBeth Nelson, died at the young age of 23 with Bieber by her side.
Fast-forward 20 years and Bieber's two children Ross, who will be 3 in October, and AnnaBeth, who just turned 1, also have been diagnosed with the disease, though there is no history of CF in her extended or immediate family.
That's why she devotes so much of her time and energy to fighting the disease that attacks the respiratory and digestive systems of its sufferers. There is no cure.
"I'm almost hesitant to show people pictures of my children because they look so healthy and so beautiful," she said. "But the message that needs to get out is that this is a progressive disease. JoBeth started out this way. But every winter, every cold they get, it's another insult to their lungs, and those things add up."
CF is a particularly brutal disease. According to the Cystic Fibrosis Foundation, it is the leading genetic killer of children in the United States and southeast Louisiana has the highest prevalence of CF per capita in the country. It affects about 30,000 children and young adults in the United States.
But despite those numbers, there has been a burgeoning hope among those with CF and their loved ones in recent years. For a long time, drugs administered to persons with CF were to only treat symptoms. But according to Bieber, a "cocktail" of new drugs that could be available within six months to a year could greatly improve the lives of 95 percent of those patients, including her children.
"They have promise to change the disease at the cellular level," Bieber said. "It will greatly change the symptoms. There won't be weight loss and they won't have to take enzymes, they won't face transplants. It could just be a couple of pills in the morning and a couple of pills at night."
And according to the Cystic Fibrosis Foundation, the drugs in the pipeline will allow patients to die "with CF" not "of CF." And that is wonderful news for everyone who knows anyone in the CF community.
While awaiting the new treatments and caring for her children, Bieber has had the chance to be the chairperson of an inaugural event that will provide a wonderful opportunity for the public to help the foundation.
The first "Grapes & Grain" benefit will be held Friday at Benedict's Plantation in Mandeville from 7 to 11 p.m. The party will feature a tasting of about 20 wines and 30 craft beers. There will be food, a silent auction, DJ music, dancing and more. There will be a cash bar provided for those who prefer other drinks.
The cost to attend is $50 per person and tickets can be purchased at the door, online at www.louisiana.cff.org/grapesgrain, or by calling 504.455.5194. All proceeds will benefit the Louisiana Chapter of the Cystic Fibrosis Foundation.
Benedict's is located at 1144 N. Causeway Blvd.
If you're looking for something to do tomorrow evening, may I encourage you to head to the Grapes & Grain benefit?
Let's help end this disease once and for all.
