News From Terre Haute, Indiana

News

April 29, 2013

Research in CF sees Great Strides

Cystic fibrosis fundraiser coming up Sunday

TERRE HAUTE — For Tree Huxford, advances in cystic fibrosis research and a new medication will mean a longer, healthier and stronger life for her son, Justin, and others who have the disease.

A drug called Kalydeco is already benefiting some people with a certain mutation of cystic fibrosis. With continued research and clinical trials, Huxford hopes that by 2017, her 20-year-old son also will benefit.

The advances are breakthrough, she said. Kalydeco is the first drug available that targets the underlying cause of CF.

“Scientists around the world are working together to make this happen,” Huxford said.  Eventually, Kalydeco is expected to benefit 90 percent of those who have cystic fibrosis.

But continued research takes money, and that’s the purpose of next Sunday’s Great Strides Walk, which will take place at 1:30 p.m. at Hawthorn Park. Registration starts at 12:30 p.m. at the Dogwood Pavilion (to the left as you enter the park).

The goal is $48,000. Those who participate in the one-mile walk are asked for donations. At least 13 teams and 300 people are expected to attend.

The event will include free refreshments after the walk, music and a Zumba warmup.

Great Strides is the Cystic Fibrosis Foundation’s largest fundraising event, with 600 walks taking place across the country — including 13 in Indiana on different dates.

“We get no money from the federal government or pharmaceutical companies,” said Huxford, who is helping organize the local walk. “We do it ourselves” through grass roots efforts.

Cystic fibrosis is described as an “orphan” disease, with only about 30,000 patients in the United States. Because of the relatively low numbers of those affected, pharmaceutical companies have been reluctant to invest in research, said Huxford and Mary Jo Brown, who has two grandsons with CF.

Cystic fibrosis is a life-threatening genetic disease that primarily affects the lungs. It affects the body’s ability to move salt and water in and out of cells; it causes the lungs and pancreas to secrete abnormally thick mucus that blocks passageways and prevents proper function.

In the 1950s, most children who got CF didn’t make it to grade school; now the median age for CF patients is 37. “That’s an amazing step,” Brown said.

But the new medication offers hope for an even longer, healthier life — for Huxford’s son and Brown’s grandsons.

“It’s a matter of life and death … and hope for life for both of those boys,” Brown said. One is a freshman at Indiana State University, while the other is a senior at Terre Haute South Vigo High School.

For more information, contact Huxford at 812-239-1282. To register or make a donation, go to www.cff.org/greatstrides.

Sue Loughlin can be reached at (812) 231-4235 or sue.loughlin@tribstar.com.

“Scientists around the world are working together to make this happen,” Huxford said.  Eventually, Kalydeco is expected to benefit 90 percent of those who have cystic fibrosis.

But continued research takes money, and that’s the purpose of next Sunday’s Great Strides Walk, which will take place at 1:30 p.m. at Hawthorn Park. Registration starts at 12:30 p.m. at the Dogwood Pavilion (to the left as one enters the park).

The goal is $48,000. Those who participate in the one-mile walk are asked for donations. At least 13 teams and 300 people are expected to attend.

The event will include free refreshments after the walk, music and a Zumba warmup.

Great Strides is the Cystic Fibrosis Foundation’s largest fundraising event, with 600 walks taking place across the country — including 13 in Indiana on different dates.

“We get no money from the federal government or pharmaceutical companies,” said Huxford, who is helping organize the local walk. “We do it ourselves” through grass roots efforts.

Cystic fibrosis is described as an “orphan” disease, with only about 30,000 patients in the United States. Because of the relatively low numbers of those affected, pharmaceutical companies have been reluctant to invest in research, said Huxford and Mary Jo Brown, who has two grandsons with CF.

Cystic fibrosis is a life-threatening genetic disease that primarily affects the lungs. It affects the body’s ability to move salt and water in and out of cells; it causes the lungs and pancreas to secrete abnormally thick mucus that blocks passageways and prevents proper function.

In the 1950s, most children who got CF didn’t make it to grade school; now the median age for CF patients is 37. “That’s an amazing step,” Brown said.

But the new medication offers hope for an even longer, healthier life — for Huxford’s son and Brown’s grandsons.

“It’s a matter of life and death … and hope for life for both of those boys,” Brown said. One is a freshman at Indiana State University, while the other is a senior at Terre Haute South Vigo High School.

For more information, contact Huxford at 812-239-1282. To register or make a donation, go to www.cff.org/greatstrides.

Sue Loughlin can be reached at (12-231-4235 or sue.loughlin@tribstar.

com.

 

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