Blowing away cystic fibrosis

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COM Cystic Fibrosis
Fritz’s Fantastic Friends pose for a team picture before the 21st annual Noblesville Great Strides Walk. "Nobody said it would be easy, but no one said it would be impossible." – Fritz Mills (Photo by Krista Bocko)

More than 100 people gathered under blue skies and in perfect temperatures as hopefulness for a cure reigned May 19 at the 21st annual Noblesville Great Strides walk to “Blow Away Cystic Fibrosis.” Walks for a cure for Cystic Fibrosis are held all around the state in the month of May.

Twenty-one years ago, Pam Crozier started the Noblesville walk.

“She knew she wanted to do something, and she really wanted to be closer to the community and where we live,” said Holly Elliott, Crozier’s niece, who has cystic fibrosis.

Cystic fibrosis is a genetic disease affecting the respiratory and digestive systems, producing thick, sticky mucus in the lungs and pancreas. Those living with CF, approximately 30,000 children and adults in the U.S., undergo time-consuming treatments and take pills daily. Earlier this year, a new drug, Kalydeco, was approved by the FDA to treat CF for 4 percent of the CF population with a specific gene mutation. The drug, a breakthrough treatment for CF, treats the disease at the cellular level instead of just treating the symptoms.

Elliott, who spends two to four hours a day doing therapies to manage her symptoms of CF, said she is hopeful that the new drug has opened the door to finding a cure for all people affected by CF.

Debbie Robertson of the Indiana Cystic Fibrosis Foundation urged everyone to keep giving to find a cure. “We used to have the funds but not the science, now we have the science but not the funds,” Robertson said.

Robertson said the fundraising goal for the walk is $26,000. As of the day of the walk, more than $20,000 had been donated. Online donations can be made at any time by going to www.cff.org, clicking on “Great Strides” and searching for “Holly’s Hope,” “Fritz’s Fantastic Friends” or other local teams.

Noblesville Golf and Batting Center, located at 17400 Willow View Rd., just off Ind. 32, will be hosting its annual Cystic Fibrosis Day from noon to 4 p.m. June 24 with music, food and raffles, and all proceeds go to the CFF.

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