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Thread: Great Strides Walk for Cystic Fibrosis

  1. #1
    Member jeffg-body's Avatar
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    Default Great Strides Walk for Cystic Fibrosis

    Cystic Fibrosis is a genetic disease that affects the pulmonary system and the digestive system. It is caused when both parents have a recessive gene for it and they both align just right. There has been many advances in the last 20 years and that has raised the life expectancy from 17 years of age to 38 years of age. Most people with this disease will need a lung transplant sometime in their life. with the digestive system the patient has to take enzyme replacement medications that could total 40 pills a day because the pancreas is blocked by thick mucous. Some people will need feedings by g-tube through their stomachs, like my daughter. This is because they can't gain weight very well. My daughter takes 24 enzyme pills a day now and she is only 2. With the pulmonary side they have to undergo breathing treatments every day. My daughter gets 3 different breathing treatments twice a day. Along with wearing a vest to help loosen the mucous in her lungs. That vest system was $16,000. The foundation payed for ours.

    Has anyone else ever attended the Great Strides walk that happens around May that is sponsored by the Cystic Fibrosis Foundation? If you haven't, it is a pretty good day of walking and fun. They have them in several places around Indy, Noblesville, Greenfield and we are starting a new one up in Alexandria. It is a great event for parents with children who are afflicted with CF in gaining a lot of information about CF and the resources out there that can help families who are going through this. It is a very laid back and casual atmosphere and we welcome everyone who wants to help to come on out and walk with us. We have done the walk the past two years and have had a blast.


    If anyone would like to donate money to the cause, the cystic fibrosis foundation has a website where you can donate through them if you don't feel like attending a walk. 90% of the money goes directly to helping of the patients. The other 10% goes to research for new medication and therapies that have shown a lot of promise. The drawback to these medications are is that they are extremely expensive. If we didn't have the special children's insurance we would have to pay out around $3,000 after my work insurance covers their part.

    Thank you for looking at this and if you have any questions you can e-mail me at: jperry@goodwill-indy.org
    Last edited by jeffg-body; 03-13-2010 at 11:40 AM. Reason: forgot to add something

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Is anyone interested in walking? It would be good for our biggest loser team.

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    Member idioteque's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Bump

    I could use the exercise, I'd be there if I weren't hundreds of miles away. Best wishes to your daughter.

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    Member Erik's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Quote Originally Posted by jeffg-body View Post
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    Is anyone interested in walking? It would be good for our biggest loser team.
    What is the date of your walk?

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    I'll have to check with the wife on the dates. The Indy, Noblesville and Greenfield date is different than the Alexandria date. I know they are all in the first and second week of May. The Alexandria one is going to be special because it is the first year for it there. My wife is partnering with the Mayor up in Alexandria because he has a grandaughter with CF that is in the same class at school with my older daughter. It should be a good one. I have to give credit to my wife though, she is a fundraising machine. Last year with some help from a few businesses she raised well over $2,000 when we were expected to get about $500. Applebees does a dine to donate where they donate 10% of their earnings from every person that has a flyer. For being there for 2 hours we ended up with over $600 alone.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    To check the dates you need to go to the Cystic Fibrosis Foundation website at http://www.cff.org

    Click on the Great Strides area and click to register to a walk. It will pop up the whole state's CF Great Strides walk locations. They are all in the first three weeks of May. The Alexandria, IN one is on May 1st and I encourage people to attend that one because with it being the first one in Alexandria it will be a bigger deal. Also it should be a bigger deal because the mayor is helping out quite a bit. He has a passion for finding a cure for CF as we are because his grandaughter has CF as well. There should be great food and drinks available. And donations are always welcome.

    Oh yeah, my daughter is doing well now she is out of the hospital and she is taking place in a clinical trial for a new breathing treatment.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Is there anyone else out there that has a loved one with Cystic Fibrosis?

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    Member SycamoreKen's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    The youth pastor at the church who's school i work for has a son with it. They just got news this week he has a lung infection and insurance is fighting them on meds. here in San Antonio they hold an event where people climb the steps of the Tower of the Americas to raise money for CF. I think i will give it a shot next year.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    The lung infections can be bad and the meds are outrageously expensive. If it is a pseudonoma infection it can be even more brutal with the meds are ridiculously priced. If it weren't for the Cystic Fibrosis Foundation helping us we could not have gotten the meds for my daughter's last infection that was a pseudonoma. For some people, the pseudonoma can never be fully eradicated and they have to do the meds their entire life. We got lucky that is was caught early in my daughter and she was able to overcome it. The good thing about the foundation is that 90% of the funds that are donated goes to treating kids with the disease.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    If anyone is in the Anderson area we plan to do a "dine to donate" fundraiser where everyone that eats at Applebee's on that day with a flyer, then 15% of their bill will go to the Cystic Fibrosis Foundation. It went really well last year with us raising more than $500

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Got some good business sponsorships this weekend. The new gas plant up in Alexandria and Nestle said they would sponsor. Big up's to my wife for working to get them involved. She has also sold 200$ in candy bars, compared to my 13$. Our total goal is $500 so she is kicking my butt.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    We will be doing the dine to donate at Applebee's in Anderson in two weeks. Everyone with a flyer that comes in 15% of their bill will go to the Cystic Fibrosis Foundation. Last year we got over $550 after everything was added up. It was a blast last year.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Tomorrow is the big dine to dontate at the Anderson Applebees. If anyone wants to come it is an all day thing. Just let me know and I can shoot you a flyer that you have to bring in. The cash raised goes to a very good cause to help keep kids with cystic fibrosis alive, just like my little girl Alex.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    We had the dine to donate function at Applebee's tonight and it was awesome. We will find out tomorrow on how much we raised and they will cut us a check. Applebee's came through big just like last year time and we appreciate the support.

    If anyone would like to do the walk up here in Alexandria we are gonna have free Pizza Hut pizza and Subway sandwiches for the participants.

    Oh yeah, they make a pretty mean long island iced tea there, whew.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Applebee's went well and we got over 150$. The walk is less than 1 week away now and we have raised a total of a litle over 2,000$. We did get some food sponsors from Pizza Hut and Subway who will be providing free food.

    The walk is at Beuhla Park in Alexandria at 1:00pm on Sunday. Great cause, great food and a great time. Hope to see someone there.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Tomorrow is the big day and the weather forecast could not be worse. we have moved the walk to the Emery Lee Building on the park grounds. There will still be a pretty cool party and ceremony though. Still free pizza, subway and coke products. Hope to see someone there.

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    Member jeffg-body's Avatar
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    Default Re: Great Strides Walk for Cystic Fibrosis

    Just wanted everyone to know that the walk was a huge success today with over 300 people and 7,600 raised for the cystic fibrosis foundation. Unfortunately I couldn't attend because my daughter came down sick this morning with a fever of over 102.6 and is at Riley to see what the problem is. Hopefully next year will even be more successful.

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