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How To Support Cystic Fibrosis Efforts

How To Support Cystic Fibrosis Efforts

“Your daughter has Cystic Fibrosis”

“It’s terminal.”

“The average life expectancy is 31.”

“Drug companies don’t want to formulate drugs for CF because there is such a limited patient base.”

These are snippets of the conversation I had 13 years ago with the pulmonologist that diagnosed my then 6-month-old daughter with Cystic Fibrosis.

That was my introduction to the world of CF.

In case you’ve never met someone with CF (and there are only 30,000 people in the U.S. who have it, so it’s not surprising if you haven’t) let me tell you a bit about it and share some ways you can support the cause.

What is Cystic Fibrosis

What is Cystic Fibrosis

CF is a genetic disease. You receive one copy of the defective gene from each parent. The defect causes a thick, sticky mucus to build up in your organs, but especially in your lungs and pancreas. In the lungs, it traps bacteria and viruses, leading to infections and eventual scarring of the bronchial tubes. In the pancreas, it blocks the release of digestive enzymes, so people with CF don’t receive nutrition from the food they eat.

A person with CF does hours of breathing treatments, chest PT, and takes special digestive enzymes along with other medications to help keep them healthy. Taking 30+ pills a day is not uncommon, but unfortunately, that’s just for maintenance.

While the CF Foundation has made amazing advancements in the treatment of CF, there is currently no cure. Here in Wichita, we have an amazing group of supporters who are working hard to change that.

There are several events coming up that you can get involved in to help us make CF stand for Cure Found!

The Poker Run

Date: Saturday, April 28
Location: The Haysville VFW Post at 7504 S. Broadway

This is the eighth year of The Poker Run, and it’s being dedicated to the memory of Emily and Chris Simon, two siblings who tragically lost their battles with CF. Vada Carpenter, who has a granddaughter with this terrible disease, helped start the Run.

“I only vaguely knew what CF was when my granddaughter Hallie was diagnosed," said Vada. "I didn’t realize all she would have to do every day just to try to stay healthy. The breathing treatments, chest physiotherapy, and all the pills. The doctor’s appointments and the hospitalizations. We started the Poker Run to raise money and awareness, so hopefully one day she and others with this disease won’t have to go through all that. Going into our eighth year, we have so many sponsors to thank. There have been many improvements in medications and therapies for those with CF, and we are very humble to be a small part of that.”

There will be a full breakfast for $6 from 8-10 a.m.There will also be a silent auction featuring a 55” TV among other goodies. You can come for breakfast, bid on items or buy a t-shirt even if you don’t participate in the run.

Pre-registration: $20 or $30 including shirt
Registration after April 21: $25 or $35 including shirt

Contact Terry Fletcher at 316-619-8193 or tfletcher@cox.net for further information, to pre-register, or if you’d like to donate an auction item.

Great Strides Walk

Great Strides Walk

Date: Saturday, May 5
Location: Exploration Place
Start Time: 10 a.m. (registration begins at 9)

If walking is more your style, come join us for the Great Strides Walk! We’re celebrating the 30th year of Great Strides nationwide!

There will be bagels, donuts, and coffee for breakfast, so after you get registered you can grab a bite to eat and head to the advocacy tables or the Kid’s Korner. Our Kid’s Korner will feature Wichita’s own Barry the Bison and games from the Recreation Station, along with Home Depot volunteers helping the kids with build-it-kits.

Characters from the Midian Shrine Cartoon unit will be there, along with Thunder Dog! The Wichita CF clinic is hosting a mini education-day during the Walk, so if you have any questions or want to learn more about CF, this would be a fantastic way to do that.

Post-walk, we have Noodles & Company serving up a special lunch, and BJ’s will be serving root beer. Of course, no celebration is complete without cake, so we’ll have enough to serve 1,000 people!

Registration: Click here
Cost: There is no charge to participate, but we do encourage walkers to raise at least $100 (and we’ll give you an awesome shirt as a thank you!). Participants that raise $100 or more will also be given the chance to buy discounted wristbands to Exploration Place for $5 plus tax.

For questions or to inquire about sponsorship opportunities, please contact Tiffany Wilson at 316-652-6524 or twilson@cff.org.

14th Annual Wichita Golf Classic

14th Annual Wichita Golf Class

Date: Sunday, May 20 - Monday, May 21
Location: Scottish Rite Center & Reflection Ridge

If you can’t be lured by bikers or hikers, what about dinner, music, golf, and famous basketball coaches? The last offering on our list is the 14th Annual Wichita Golf Classic Featuring KU Coach Bill Self. This 2-day event begins Sunday, May 20, 5:30 p.m. at the Scottish Rite Center. Sunday night features a VIP dinner catered by Carrabba’s Italian Grill, silent and live auctions, and a live performance by Nashville recording artists Branch & Dean.

Monday, May 21st, we head over to Reflection Ridge at 10 a.m. for 18-holes on their private championship golf course. A continental breakfast will be served, and Carrabba’s will be fortifying the golfers with a delicious lunch. Unquestionably, it wouldn’t be the CF tournament without Coach Self, and you’ll have the chance at the VIP dinner to bid on playing the front 9 or back 9 with him.

Registration: If you would like to sign up a team or ask about a sponsorship, contact Randy Ball at randy.ball17@yahoo.com or 316-214-4782.

CF Sentiments

"With CF, you always have to take the good with the bad. It’s not easy seeing your children going through so much and as a parent and so many times we'd like to take away their pain. But if you look at them, they have their minds and there is always somebody or someone going through a far worse situation. My kids were so bright and were so well liked and had great friends and were greatly respected."

"The Priest I work for was telling the other lady I work with that when he went to visit my daughter in the ICU in the hospital he told her 'Hello, Emily' and she jumped up in her bubbly chipper voice and greeted him as if there was nothing wrong with her."

"My son will be gone five weeks tomorrow and we still get cards saying what a great person he was."

"My dream for the future with CF is that somewhere in the near future we can put an end to this horrendous disease.” - Sarah Simon, mother of Emily and Chris Simon


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