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CFF
- Thread starter anonymous
- Start date
I have found the CFF.org to be very supportive. We are active with fundraising and they have been extremely helpful. You have to remember that most of the people in the local offices are there to fundraise. They are not there to be psychologists or counselors for people with CF. We utilize them for what they are for.
I have noticed that some people have negative feelings about the CFF as well. It can be discouraging to read about it especially during a big fundraising time for a lot of us, i.e. Great Strides. I have have had only positive experiences with the CF Foundation. I have three speaking engagements this week with our local office in an effort to get corporations to walk in Great Strides here in Houston so I am contact with the Foundation quite a lot. I really see the individuals at our local office working hard trying to raise money for a cure for cf. I am just so thankful that there are people willing to work for a cure everyday (and they don't have anyone with cf in their family). Obviously, they are a foundation and some will be find things wrong with their decisions and how they spend their money. But the way I see is if the families with cf don't help out, how can we expect anyone to look for a cure for the disease that affects us.
I mentioned on another board during the conversation that our CF clinic told me that our local cf office donated the ($100,000) infant lung machine that my son uses. That is one way they have helped us locally.
A few have voiced their opinions that they would like to see the Foundation help out the individual families with medical expenses. That would be wonderful if they could do that, but they are about fundraising for new treatments and medications.
Sharon, mom of Sophia, 3 and Jack, 1 both with cf
I mentioned on another board during the conversation that our CF clinic told me that our local cf office donated the ($100,000) infant lung machine that my son uses. That is one way they have helped us locally.
A few have voiced their opinions that they would like to see the Foundation help out the individual families with medical expenses. That would be wonderful if they could do that, but they are about fundraising for new treatments and medications.
Sharon, mom of Sophia, 3 and Jack, 1 both with cf
Hi, I am fairly new to the world of CF (my daughter was diagnosed in June 2004) and have also heard some negative thoughts on it...however there are SO many positive things about the CFF. For one, it was ranked the #1 medical foundation/organization to donate money to by Smart Money Magazine last year bc 88cents of every dollar donated (I think it was 88, maybe it was 90?) goes directly to medical research/sutdies which is more than any other foundation. I am sure there are things the foundation could do that would make people more happy, like help with medical bills etc but each foundation can only do so many things, you know? Anyway, I am ALL FOR fundraising for the CFF bc they are working so hard at getting better treatments and hopefully a cure!
Oh ya, GO SHARON on your speaking engagements! That is really neat! Keep up the good work, it is REALLY appreciated!!
Kelli (mom of Sydney 22 months wcf)
Oh ya, GO SHARON on your speaking engagements! That is really neat! Keep up the good work, it is REALLY appreciated!!
Kelli (mom of Sydney 22 months wcf)
Purplelungs
New member
Maybe those who have the negative feelings towards the CFF was because of their local chapter...not the overall foundation. Sometimes it can be a few rude people that ruin the whole for someone. I do know some are wishing the cff could help those desperate for meds...i have heard that some think the CFF have a one track mind and want to find a cure and meds for profit...mainly they were upset because they dont feel like a cure is in their future, they just wanted better meds and help getting them for those needing it. I can see where they are coming from. I also see the good they do....you cant have the best of both worlds. Thats why the CFF does the research and fundraising...and other organizations help with the person getting meds and do fundraising for helping the person (maybe with meds or transplant) and also give money to the CFF. I thnk they are doing what they need to do.
I have always held the CFF in high regards, but I live in Michigan and received an email about our govenor trying to take the "Childrens speical health care" program away from adults w/ another source of insurance using CSHCS as their secondary. Anywho the house of representatives were meeting on the bill today. Monday 11th to hear testifying on opposing or support of the bill. I was there to show that I oppose this bill and2 other CF'ers were there. I didn't see anyone from CFF. Now I could be wrong and they are holding the hearings again next Monday. Because maybe they didn't get the opportunity to talk. They only allow a certain amt of time for each day. I guess I will find out next week. But CFF is actually sharing the forumn on the bill with hemophiliac which are also being cut fromthe program, she said they were having a hard time with CFF getting involved at all. They have known about it since March. So I'm kind of upset about it. I just found out on Wednesday of last week and feel we should be more informed about such things and they should put a little bit more effort into the program which pays the CF centers in which they are affiliated with. Hmmmm... Becky 35/CF in Mic
I think that there are about 12 or so of the infant lung function machines accross the US. Perhaps there are more now. Anyway, a young child (up to around 2.5 years) is sedated by an oral medication and is placed in a pressurized "box" for about an hour. They are able to place a mask over the face and force air into the lungs to determine the lung function. My son had it done a 6, 7, 13, 19 months old for the study I was referring to. The good news for my son is that it showed his lungs are functioning as well as a child his age without cf and he is not showing lung disease at this point.
Honestly, I would not jump to have my son retested. But he was having a lot of respiratory issues at six months when we decided to do the study, so it did help us decide what was going on with him. I think it was just a reflux related cough since it went away with Prevacid when he turned nine months old. Our cf center received the machine when my daughter (w/cf also) was one years old. I choose not for her to take the test since she does not have a lot of respiratory issues. That was a good decision for us. I have not enjoyed seeing my son put to sleep and watch the air forced into his lungs like that. But it did serve a purpose and I think it is important for us to participate in research.
Sharon, mom of Sophia, 3.5 and Jack, 19 months both with cf
Honestly, I would not jump to have my son retested. But he was having a lot of respiratory issues at six months when we decided to do the study, so it did help us decide what was going on with him. I think it was just a reflux related cough since it went away with Prevacid when he turned nine months old. Our cf center received the machine when my daughter (w/cf also) was one years old. I choose not for her to take the test since she does not have a lot of respiratory issues. That was a good decision for us. I have not enjoyed seeing my son put to sleep and watch the air forced into his lungs like that. But it did serve a purpose and I think it is important for us to participate in research.
Sharon, mom of Sophia, 3.5 and Jack, 19 months both with cf
midwestmama
New member
I have a lot of respect also for CFF. We are doing as much fundraising as possible for them. I had a reporter ask why we didn't keep the money we raised for my son's medical expenses and my thoughts were that at this moment, money for research will benefit us more to find that cure or anything they can find to pro-long his life or make it more comfortable and 'normal'. My only disappointment is that our chapter has had a turnover in contact people, but the neighboring state has been a great help to me until we get a replacement.