A promising new drug for some Cystic Fibrosis patients gives Jenny Bulach hope that help is on the way soon for her daughter.

Bulach's 7-year-old daughter, Julia, was diagnosed with the deadly lung disease at 14 months old. Every day, Julia spends up to two hours taking two breathing treatments and swallows 19 pills to handle digestive issues that accompany the disease.

In January, Kalydeco, was approved by the Food & Drug Administration to treat 4 percent of patients with a particular gene mutation of the disease. Work continues on a drug for the largest CF population that includes Julia.

The genetic disease affects about 30,000 people in the United States and 70,000 worldwide. About 500 live in the Cincinnati area.

Foundation Funds Research

Because CF affects such a small number, drug companies don't find it profitable to fund clinical trials. And so, the Cystic Fibrosis Foundation, including the Cincinnati chapter, steps in, funding research for Kalydeco and other drugs in the pipeline.

"I just can't say enough about the CF Foundation and how much hope and promise there is in this fight," says Bulach of New Alsace, Ind., in Dearborn County. "You can tell, just by the strategy of the foundation, that they are turning the curve of this being a fatal disease to a chronic disease. It is within reach."

Alison Bethel, executive director of the Cystic Fibrosis Foundation's Greater Cincinnati Chapter, calls Kalydeco a "medical miracle" that is intended to eliminate lengthy breathing treatments that clear the lungs of thick and sticky mucous. The breakthrough drug could lead to other discoveries for a cure.

"The median age of survival for a person with CF is the late 30s," Bethel says. "We've come a long way, but obviously, not far enough. That's very young and we're still losing people far too early."

The local chapter works to provide access to quality care and effective therapies for people with the disease, but its bread and butter is raising funds for life-saving research, Bethel says.

Young Professionals Dive In

About 20 fundraising events are held annually. One of the newest, "Cincinnati's Finest Young Professionals," launched three years ago.

"We realized that there are some really outstanding young professionals in the Greater Cincinnati area," Bethel says. "We've come to get to know them through other events. They're our future leaders of our community, but also the future leaders of our organization."

So, the event helps foster those relationships while also serving as a fundraising platform. This year, 25 young professionals were selected from 80 nominated to help raise funds.

They each embark on a 15-week fundraising campaign. Each dollar raised garners a vote, so the top vote-getter wins the title of "The Finest Young Professional."

All participants are recognized for their contributions to the community and career successes at "The Finest Finale," which features food and wine tasting from 10 of Cincinnati's finest restaurants. Total Quality Logistics, which employs many young professionals, was the main sponsor for the March 1 event.

This year's group raised $86,000 net, about a $25,000 increase over last year.

Lisa Terry, 32, vice president of Cloverland Drugs, Inc., raised the most money "” $21,000, which included $8,000 donated through pin-up campaigns at local Taco Bell stores.

A good friend's 4-year-old daughter has CF, so Terry wanted to be involved helping children like Emma.

"Every amount helps, whether it's money or time," Terry says. "People who get involved can really make a difference." -


 

Standing (from left to right): Sheri Campbell (Duke Energy),
Kelly Sifford (Liberty Mutual Insurance), Rebekah Vazquez (LOTH Inc.), Lindsey Trusler Dietrich (Trusler Insurance), Julie Hengehold (Q102), Kim Wissman (Abbott Vascular), Lisa Terry (Cloverland Drugs, Inc), Jennifer Lanser (Lotus Holistic Health & Wellness),
Michelle de la Vega (Divisions Maintenance Group), Crista Bowman (Cincinnati-Northern Kentucky International Airport) and
Kim Baltz (Grant Thornton).

Sitting (from left to right): Adam Day (Northwestern Mutual Financial Network), Jeff Campbell (Cintas), Storm Bennett (Killerspots.com, Inc), Frank Marzullo (Fox 19) and Joe Darwish (Hoeting Realtors).