Batesville Herald Tribune, Batesville, Indiana

Local News

May 8, 2013

Walk jump-starts cystic fibrosis research

— A Great Strides  Walk for the Cure of Cystic Fibrosis is slated for Sunday, May 19, at Liberty Park in Batesville. Sponsored by the Cystic Fibrosis Foundation Greater Cincinnati Chapter, registration starts at noon and the 5K at 1 p.m.

After participants finish, “We’ll have a cookout and Magical Dan of Batesville will do a magic show,” reports Leslie Lucas, CFFGCC development director.

She expects close to 250 people on 24 teams at the Batesville fundraiser. “It’s definitely grown.” Corporate teams include Sunman Elementary School, Hill-Rom, Batesville Kroger and Weight Watchers.

In 2012, the Greater Cincinnati Chapter raised $610,000 to fund life-saving research, quality care and education programs, according to the Web site. “Real progress toward a cure has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease.”

This year the goal is $660,000. To help achieve that figure, “we’re hoping to raise $40,000” at the Liberty Park event, Lucas says.

For the fourth year, Joe and Jenny Bulach, New Alsace, and their children, James and Julia, will be walking in honor of their daughter, 8, who was diagnosed with the rare illness at 14 months.

Jenny Bulach believes the annual walks are important “because supporting the CF Foundation is really the future for these kids.”

She explains drug companies tend to ignore creating cystic fibrosis medications because with such a limited patient base, it’s not very profitable. “The CF Foundation jump-starts the research ... so companies will develop” new drugs.

In 2012, the U.S. Food and Drug Administration approved the groundbreaking drug Kalydeco™,  the first one to treat the underlying cause of CF, according to Lucas notes, “It corrects cystic fibrosis at the cellular level for 4 percent of our patient population. It’s not a cure for everyone ... but it’s created a pathway for us to follow and we know we can do it. It’s a matter of time and money” before more patients see improvements.

Julia’s first symptom was a cough that worsened. Her mom recalls, “It took several months to actually figure out she had CF. I was devastated, primarily because I was not very well educated on the disease.”

The baby was hospitalized for two weeks at Cincinnati Children’s Hospital Medical Center.

As Julia’s condition improved, the parents learned how to care for her. They performed 25-minute manual chest therapies three times each day. “We patted her fairly hard on different areas of the lungs for two minutes a spot.” They also pulled capsules apart to sprinkle the tiny grains of medication on applesauce so that sticky stomach mucus could be broken down.

Life got easier around the time the toddler turned 2. She was big enough to begin using Hill-Rom’s The Vest two to three times daily. Once the vest, which looks like a life jacket, is inflated, it is hooked up to a machine for 24 minutes each time, puffing air against the girl’s body to loosen mucus. She also was able to swallow capsules. Now the Sunman Elementary School second-grader takes about 30 pills a day.

On a high-calorie, high-protein, high-fat diet, “Julia eats 50-75 percent more calories than others kids her size,” Bulach says. “The nutrients don’t absorb as well so she has to overcompensate. It’s not easy getting 3,000 calories a day in an 8-year-old!”

Over the years, the girl has undergone outpatient sinus surgeries and had lung samples taken six times. Two summers ago, when Julia’s lung function decreased, she was hospitalized for two weeks again to receive intensive antibiotics and 45-minute chest treatments four times daily. To maintain her health, the student visits specialists there quarterly.

With recent medical advancements, “the CF Foundation is the reason these kids have so much hope,” the mother realizes.

“I don’t think you’ll find a more focused organization on finding a cure. They put so much of the effort in the research ... not treating the symptoms, but for a cure.”

Text Only
Local News
  • nws - bv072514 - BCSC lowery leaves Lowery leaves school board Batesville resident Chris Lowery’s appointment as Ivy Tech Community College Columbus/Southeast chancellor caused him to resign from the Batesville Community School Corp. board July 21.He has been a District 3 trustee for a dozen years, serving as bo

    July 25, 2014 1 Photo

  • National Night Out set for Aug. 4 Area residents can enjoy a grill-out and pool party by attending the local National Night Out Monday, Aug. 4, from 5:30-8 p.m. at the Batesville Memorial Pool. Sponsored by the Coalition for a Drug-Free Batesville and the Fraternal Order of Police, t

    July 25, 2014

  • Batesville Summer Bash starts Aug. 1 The third annual Batesville Summer Bash begins at 8 a.m. Friday, Aug. 1, and runs until 10 p.m. Saturday, Aug. 2, in downtown Batesville. The event features sidewalk sales, including home-based business booths; the Saturday morning farmers’ market an

    July 25, 2014

  • Shell building site determined The Batesville Economic Development Commission pinpointed where to construct a shell building within the city’s vacant industrial park July 18.Consultant Greg Martz of GM Development, New Castle, recommended a 7-acre site just east of Merkel Road and

    July 25, 2014

  • Babe Ruth Tournament benefits the whole community Local leaders pointed out the benefits resulting from hosting the 10 and under Central Indiana Babe Ruth Tournament at The Plex here July 10-13. Seven teams participated in the tourney, bringing more than 120 young players to Batesville, plus familie

    July 25, 2014

  • Brother charged in shooting

    July 23, 2014

  • Apartments tax abatement approved After gaining a recommendation from the Batesville Economic Development Commission, developer Bruce Rippe was at the Batesville City Council meeting July 14 to request a 10-year real property tax abatement for Depot Square, which will be 45 one- and

    July 22, 2014

  • Readers' input will guide newspaper staff “What newspapers do you read? What Web sites do you visit? Where do you shop? How do you use our newspaper and our Web site?” wonders Laura Welborn, publisher of The Herald-Tribune, Batesville; Daily News, Greensburg; and Rushville Republican.Answers

    July 22, 2014

  • nws - bv072214 - BPRB Batesville Parks and Recreation Board brainstorms new funding Batesville Parks and Recreation Board members brainstormed different ways to offset budget cuts and increasing demands across several projects at the July 16 meeting.Funding first came up in the meeting as Eric Frey, Administrative Resources associat

    July 22, 2014 1 Photo

  • nws - bv072214 - RCCF impact grant $25,000 community impact grant awarded From a pool off 11 applicants, the Ripley County Safe Schools Commission Safe School Readiness project was chosen to receive the $25,000 Ripley County Community Foundation Community Impact Grant. It will provide each public school district in Ripley

    July 22, 2014 1 Photo

Featured Ads
AP Video
Kerry: Humanitarian Cease-fire Efforts Continue Raw: Corruption Trial Begins for Former Va Gov. The Carbon Trap: US Exports Global Warming UN Security Council Calls for Gaza Cease-fire Traditional African Dishes Teach Healthy Eating 13 Struck by Lightning on Calif. Beach Baseball Hall of Famers Inducted Israel, Hamas Trade Fire Despite Truce in Gaza Italy's Nibali Set to Win First Tour De France Raw: Shipwrecked Concordia Completes Last Voyage Raw: Sea Turtle Hatchlings Emerge From Nest Raw: Massive Dust Storm Covers Phoenix 12-hour Cease-fire in Gaza Fighting Begins Raw: Bolivian Dancers Attempt to Break Record Raw: Israel, Palestine Supporters Rally in US Raw: Air Algerie Flight 5017 Wreckage Virginia Governor Tours Tornado Aftermath Judge Faces Heat Over Offer to Help Migrant Kids Kangaroo Goes Missing in Oklahoma More M17 Bodies Return, Sanctions on Russia Grow
Photo Gallery

Seasonal Content
Hyperlocal Search
Premier Guide
Find a business

Walking Fingers
Maps, Menus, Store hours, Coupons, and more...
Premier Guide

Click HERE to read all your Parade favorites including Hollywood Wire, Celebrity interviews and photo galleries, Food recipes and cooking tips, Games and lots more.