Updated: Wednesday, 25 Apr 2012, 10:37 AM EDT
Published : Wednesday, 25 Apr 2012, 10:37 AM EDT
The Cystic Fibrosis Foundation is holding their annual Great Strides Walk to benefit those living with the disease.
Pam Spitzer from The Cystic Fibrosis Foundation and Sheridan Sharkey, who lives with Cystic Fibrosis, joined The Rhode Show to talk more about the disease.
"I was diagnosed when I was 16 years old, so I was just weeks away from my junior prom. So, it kind of changed my outlook on life," said Sheridan Sharkey. "I have daily treatments that I have to do, and you know, just trying to stay healthy and keeping a positive outlook."
Kalydeco, a new drug to specifically target the underlying causes of CF at a molecular level, was FDA approved in January.
The medication only targets a specific mutation of CF, so specific, only 4% of the CF population has it.
"I walked into Children’s Hospital Boston for a routine visit in February where my pulmonologist nonchalantly told me I am that 4% (one of 1,200 people in the US). I have the genetic mutation Kalydeco was developed for. I nearly jumped out of my chair!" explained Sheridan.
Sheridan has been on Kalydeco for about 6 weeks now and says she can already feel the difference.
"The most tangible benefit I can notice is that I don’t cough. I can breathe much easier and it seems to have improved my energy level. Most importantly, I can dream again. Recently engaged in February, I can think about having children and seeing them grow up , even living to see my grandchildren. I just started a 401K!"
The Cystic Fibrosis Foundation has committed $75 million towards research for the drug Kalydeco. Sheridan said research like this is why support The Cystic Fibrosis Foundation is so important.
The 2012 goal of the annual Great Strides Walk is to raise nearly $40 million.
In Newport and Pawtucket the walks are scheduled at the following locations:
Saturday, May 12 Newport Walk: Brenton Point State Park
Check in 9:00 AM Walk:10 AM
Saturday, May 19 Providence Walk: Slater Park, Pawtucket Check in 9:00 AM Walk: 10 AM