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65 Roses Golf Classic: A Tenacious Tournament Featured on KARE 11 News (NBC)

Voiceover: You're watching KARE 11 Today in High Definition.

Host: Welcome back. If you're looking for a wonderful way to enjoy some time outdoors and help a great cause at the same time, we have the answer. Next week Ergodyne is hosting its annual golf fundraiser for the Cystic Fibrosis Foundation and then joining us this morning with the details, Tom Votel and Molly Boyum. So thank you so much for joining us. This is the 14th annual?

Tom: It is.

Host: Okay and has it been in the same place each time and people know that next Monday it's time to play, right?

Tom: Pretty much. At the Legends in Prior Lake.

Host: You're with Ergodyne so tell us your experience with cystic fibrosis.

Tom: Well my experience with cystic fibrosis began when our daughter Chelsea who is now 23 years old was diagnosed with CF.

Host: Okay and so then you've been involved in fundraising and doing the golf tournament then for all these years?

Tom: Yeah, as soon as we knew that reality we decided that we needed to get involved and do something to raise money to try to find a cure for CF.

Host: Well there's been a lot of things that have happened in the length of time that you have been involved with it and let's talk to Molly about that a little bit. For folks who might not be familiar with it, they might see a child with maybe breathing issues, but let's talk about that a little bit.

Molly: Cystic fibrosis is a genetic disease and it mainly affects a patient's lungs or digestive system. So if it affects their lungs, there's a really thick, sticky mucus that clogs their lungs, making it very hard for them to breathe. And on the digestive side their body just does not absorb the food as well as ours does. And so they obviously need that to grow and to be healthy.

Host: In the last couple of years though, there have been some very exciting breakthroughs, and it comes with treatment and other things, correct?

Molly: Correct.

Host: What are some of the things that you've seen?

Tom: Well the treatment part of it is a really big deal because kids and actually young adults and now even adults who are living to a much greater degree than they were previously. But what's really exciting is this is actually a disease that is on the cusp of being cured, which is real. CF just announced a breakthrough recently of a drug called VX-770, which actually corrects the genetic defect. It's the first time a drug has ever corrected a genetic defect so it's a major scientific breakthrough on several levels. But we're excited of course, that in this instance that CF actually is getting corrected.

This particular drug addresses 4% of the children with CF. CF has another drug in the pipeline which will address 90. So hopefully, by the time this new drug becomes commercialized which is scheduled for 2012, the next drug will come in the pipeline and then 94% of children and young adults with CF will actually have a fix for their disease, which is really exciting.

Host: It's got to be very exciting for their families because you've waited so long to have something happen and finally it seems like something is happening.

Tom: Well people raise money for lots of great causes but it's not often. I wish it was more often but it's not often that you get to be part of something, to move it across the finish line, and CF is very close to that, which is why our fundraising continues to be very critical because we need the money for the critical research to finish the job.

Host: Well it looks like you're having a lot of fun out there on the golf course and not to mention maybe a little dangerous. A little danger is thrown in there as well. And again the name of the new golf class is called 65 Roses and you had to explain to me what that means. So why don't you tell our viewers at home what that means.

Tom: It's a name that was chosen by the foundation because a little boy had difficulty explaining his disease, was cystic fibrosis and so he called it 65 Roses and it's become a sweet little reminder that there are 30,000 people in the United States who have CF, 70,000 in the world, and they all need this important research to continue.

Host: All right. Well thank you so much for joining us this morning.

Tom: You are welcome. Thank you.

Molly: Thank you.

Host: Have fun at your golf tournament. Let's tell everybody at home that the 65 Roses Golf Classic next Monday, July 18th at the Legends Golf Club in Prior Lake. Registration starts at 11 a.m. And for details just visit our show page at kare11.com under the news tab.

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