Fund Raiser

[steffanizz]

I'm helping raise sponsors and gather donations for our third annual golf outing to raise money for CFF. Our event is called "Cops FORE a Cure". It will be held in September in the Milwaukee, WI area. This event was started by a police officer to raise money for CFF. Another officer we work with has a little girl with CF and we're all just looking to help out. I'm looking to expand our pool of sponsors and get some bigger and better donations in hopes of raising more money for CFF. I'm also trying to promote our event. If anyone would be willing to make a donation, be it cash, an item for raffle or an advertisement sponsor, Please let me know. I have all the official papers I can send out so you know more about our event. Also if anyone is interested in golfing, I'd love to send out some applications. Thank you all for you time.
Stephanie
"Cops FORE a Cure"

 

[rose4cale]

Hi Stephanie. Could you send me info on golfing? We have a friend in Milwaukee. Don't know if we'll make it or not, but a date and time would be beneficial. Thanks.

shellybutts11@hotmail.com

 

[steffanizz]

Sorry for the delay in the reply. I've been busy with work. I will send you the info right away. Thank you for asking. It would be great if you could make it. If not please spread the word to your friend here!
Stephanie

 

[anonymous]

Good luck with your fund raiser.

I am afraid I don't support contributions to the CF Foundation, as all their funds go to the pharmaceutical companies, which haven't produced a medicine that has been useful to me since Pulmozyme back in 1994. Besides which, when it comes to even directing CF patients to any kind of social or living aid, exclusive of pharmaceutical needs, the CF Foundation is completely dislocated. I find that they don't care about the patients or their life and social challenges as much as they care about raising money for big business and pharmaceutical companies' R&D departments, which like I said haven't been effective lately at finding a cure much less an effective and useful drug.

Best of luck to you though.

Lance
CF/33

 

[JazzysMom]

I respect your opinion, but know personally from being involved that they are working on what you have addressed. My CF clinic participates in studies, surveys etc. Granted CFF have based most efforts on the medicinal side of things. Please realize that just like pregnancy hasnt needed to be addressed until the last decade (or so), many other adult issues havent had to. There was no need if a person wasnt living to adulthood or the numbers didnt justify it. Numbers are a big thing no matter what organization you deal with.

 

[anonymous]

JazzysMom,

I am afraid that the CFF spends 100%, not most as you suggest, of their efforts at raising money to give to pharmaceutical companies. In no way, at no point is CFF concerned with the CFer in the trenches today. All those bleeding heart stories are out there to bring in dollars for the big drug companies, and Robert Beall the president of CFF is the middle man. I have raised much money for them, spoken at several events, and persuaded many to take up the CFF cause, at least I did until I realized how much of a "business" the organization is. They have no heart, its all about the great American dollar to them.

You suggest, like pregnancy in CF adults, these social and quality of life issues are new to the cause and take time and effort to address. These issues are not new. As long as I have been around these have been persistent issues. Only in the past 6 years have I personally had to focus on these problems due to the stages of my CF. But I assure you, when I was feeling better 8 years ago, there were others with CF who couldn't afford expensive hospitalizations, expensive drugs, had a difficult time finding work that they could perform, and struggled every day to improve the quality of their daily life. These are not new issues, just ones that CFF dont regard.

I am afraid we stand opposed, and cannot agree to support the CF Foundation. Ultimately, this is probably best, as we do need people to allocate effort to raise money for new drugs (even if they never seem to make new drugs), and we also need others to allocate their effort to improve the quality of life and address more current and relevant social issues for the CF patient in the thick of things.

Thanks for the dialogue.
Best wishes.

 

[anonymous]

Peaople have there oppinions but mine is with the cff. If I didn't have insurance, was poor and had nothing then you try to collect donations personally for you but the cff states that the money is for study and making new med. If the cff didn't do this then where would the cf people young and old be. Things have come along ways from years ago because of the cff. Yes it's pretty bad that costs are so high but they are for everything. If someone produces something that knowbody else has then they can charge what they want and make a billion. But one hand washes the other. Life is about money these days. There are people that are poor here but instead we send money for the poor to other countries!!? My family don't have much but we live day to day don't worry about tomorrow till tomorrow comes. As long as people have TLC (Tender,Love,andCare) somekind of roof over there heads we'll be ok. What did people do in the olden days trade but life changed because of greed and money if there was no such thing as money what we you do. So instead people think we are suppose to support other people's responsabilities instead of donating money to a foundation that in the future will be helping a relative down the road diagnosed with cf.I know there are couples that believe if they are carriers we won't have kids because of it or do the pregnancy scientific way( what ever its called) but if everyone did it this way with all the chronic diseases out there then life would be trying to be perfect Not Never.This is just my oppinion on this don't want no trouble.I thank every day that the cff has done what it has for the ones that are born today have so much of a chance. I know it doesn't do much for the ones born years ago but it makes a future for the next generation.That's why we do things to learn more and pass it on to better things.The cff is public about using the money for scientific reasons but thats them doing a well done job.......It sucks that it costs so much but doctors,hospital stays , life in general is high priced.
Katina( mom of Saydee)