Making Strides In The Fight Against CF

By Jan Howard

A much loved cousin was in the thoughts of a Newtown resident as he participated in the eighth annual Ryan J. Sabbagh Memorial Great Strides Walk May 20 in Danbury to benefit cystic fibrosis (CF) research.

Tim Vogelman raised $2,400 to fight the disease his cousin, Jill Ann Perlette, had battled since she was 18 months old. Members of Mr Vogelman’s family, including Ms Perlette’s parents, his mother and sister, participated in the CF walk in Buffalo, N.Y., and raised over $2,000, bringing the total the family raised to about $4,500.  

The 10-kilometer Great Strides walk was named for Mr Sabbagh following his death in 1998 at the age of 23. The walk began and ended at the Danbury city green.

“My cousin Jill was like a sibling to me,” Mr Vogelman said this week of Ms Perlette, who died on January 13 at the age of 27. “She struggled with this her whole life. It’s a progressive disease.”

Mr Vogelman said his cousin had looked forward with great anticipation and eagerness to a double-lung transplant operation last November, in which her mother and father each donated a lobe to replace her diseased lungs, giving her a chance for a new life.

“This was her option. She wanted this chance,” Mr Vogelman said. Sadly, Ms Perlette suffered complications and died about two months later.

“She was too weakened from a prior illness. She used to go in and out of the hospital,” Mr Vogelman said. As bacteria attacked her lungs and caused numerous complications, Ms Perlette was forced into several months of hospitalization last year.

Despite the challenges of her illness, Ms Perlette lived with passion and courage, he said, and pursued her goals with persistence and optimism. She fulfilled her dream of becoming a pediatric nurse, and was of great comfort to children in the hospital.

“She knew what it was like to be in the hospital,” Mr Vogelman said, noting his cousin was honored for extraordinary dedication by her hospital as one of their outstanding caregivers.

Mr Vogelman and his wife, Sue, live on Rock Ridge Road with their son, Timmy, 4. Sue Vogelman grew up in Newtown, and Mr Vogelman has been a resident since 1988.

Over 200 walkers raised about $30,000 in the Danbury walk for the Cystic Fibrosis Foundation, which researches possible cures for CF. Statewide, over $460,000 was raised. Nationally, $15 million was raised. The Foundation spends 89 cents out of every dollar raised on research and treatment. In 1999, SmartMoney, the magazine of The Wall Street Journal, picked the Cystic Fibrosis Foundation as one of the nation’s “best in the business.”

The Cystic Fibrosis Foundation was established in 1955 to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

Because CF is a genetic disease, Mr and Mrs Vogelman’s son was recently tested for CF because of concerns of his doctor. A sweat test, the standard diagnostic test for CF, was ordered. It is a simple and painless test that measures the amount of salt in the sweat. A high salt level indicates CF.

Thankfully, following a painfully anxious wait for the test, the test was performed and proved negative. Timmy did not have CF.

Mr Vogelman was also tested and though he does not have the disease, he is a carrier. However, a child must inherit a defective copy of the CF gene, one from each parent, to have CF. One in 31 Americans is an unknowing, symptom-less carrier of the defective gene. There is a 25 percent chance that the child will have CF; a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will be a non-carrier.

“CF is a positive, energetic cause,” he said, but is not widely known. “As my uncle put it, it’s not a disease with crutches.” Individuals with CF do not have outward appearances of disability.

“It’s so unknown in a way,” Mr Vogelman said, which is why he has volunteered his time and effort to get the word out about CF.

“This had become bigger than me and my family,” he said. “No little kids or parents should have to go through this. Now I can connect with other kids and families.

“Jill had a spirit you had to admire,” Mr Vogelman said. His commitment to CF “was something that was energized by her life and death. Jill gave all of us this energy.”

To prepare for the walk, Mr Vogelman launched a letter-writing campaign for donations to friends and family, burning out a printer and going through several ink cartridges in the effort. Names were drawn from the Vogelmans’ Christmas list and other sources, such as people Sue Vogelman knew from her years as a teacher.

“Cystic fibrosis encouraged each walker to raise $150. I thought I would maybe make $500,” he said.

“I was humbled that so many people responded,” Mr Vogelman said of the 70 responses he received to his letter. “They got out their checkbooks and responded.” Many of the contributions were from fellow members of Trinity Church, he said.

Since Mr Vogelman has been running every other day since last fall, the 6.2-mile walk was quite easy for him, he noted. 

“I did my walk,” he said, just as Ms Perlette had done in 1999. “Since donations were prepaid, it was an awareness walk. I wanted to get out the word. It’s a positive organization. They’re not wasting money.

“And what’s exciting is they’re making progress,” he said. “They’re making great strides.”

Cystic Fibrosis is a genetic disease affecting 30,000 children and young adults in the United States. About 1,000 new cases are diagnosed each year. Most individuals are diagnosed by the age of three, but nearly eight percent of all newly diagnosed cases are age 18 or older.

A defective gene causes the body to produce an abnormally thick, sticky mucus that leads to chronic and life-threatening lung infections and impairs digestion. Currently there is no cure.

Among symptoms are salty tasting skin; persistent coughing, wheezing, or pneumonia; and excessive appetite but poor weight gain.

Treatment depends on the stage of the disease and which organs are involved. Chest physical therapy, vigorous percussion on the back and chest to dislodge the mucus, and antibiotics for lung infections have proved effective. In the case of digestive problems, an enriched diet and replacement vitamins and enzymes may be required.

Since the defective gene was discovered in 1989, the pace of CF research has greatly accelerated. In 1990, scientists successfully made copies of the normal gene, and added them to CF cells in laboratory dishes where they corrected the defective cells. In 1993, the first experimental gene therapy treatment was given to a patient. Several gene therapy studies and clinical trials on new drug treatments are currently underway.

 If a child is suspected of having CF, parents should consult with a pediatrician or family doctor, or contact a local CF care center. Early diagnosis may mean less damage to the lungs and digestive system, and therefore a longer life expectancy for that individual.

For further information or an update on the most current research, contact the Connecticut Chapter of the Cystic Fibrosis Foundation at 860-257-6907, 800-841-2828, or email at conn@cff.org, or the national office at 800-FIGHT CF or its Web site at www.cff.org.