Aren't we all fighting the same fight?!?!?!

J

julie

New member
I'm sooo frustrated and I don't know where else to vent this frustration, so I hope here is ok. Had a telephone conference with my local CFF chapter this week about setting up a table or something of the sort at the Great strides this year. I simply wanted to hand out flyers about my organiation, and how we help CFers. To let people know WHERE THEY CAN GO FOR ASSISTANCE with stuff like insurance, ins. denials, SSI/SSDI, private short/long term disability, food stamps...and ANYTHING else they need help with (i'll take on ANY type of case!)

CFF's response... "it is our policy to not allow other nonprofits at our fundraising events" WTF??!?!?!?!?!?! Aren't we all "fighting" CF in one way or another??? CFF raises money for research - which I think is VERY important. But I'm in the "business" (not in the traditional sense of the word) of ENSURING THAT THOSE WHO'S LIVES HAVE BEEN EXTENDED DUE TO RESEARCH AND NEW TREATMENTS, ALSO GET TO EXPERIENCE <u><b>QUALITY OF LIFE</b></u>. GRRRRRR, I'm so frustrated right now. It's like they are in competition or something. I made it VERY clear I was NOT there to fundraise.
 
J

julie

New member
I'm sooo frustrated and I don't know where else to vent this frustration, so I hope here is ok. Had a telephone conference with my local CFF chapter this week about setting up a table or something of the sort at the Great strides this year. I simply wanted to hand out flyers about my organiation, and how we help CFers. To let people know WHERE THEY CAN GO FOR ASSISTANCE with stuff like insurance, ins. denials, SSI/SSDI, private short/long term disability, food stamps...and ANYTHING else they need help with (i'll take on ANY type of case!)

CFF's response... "it is our policy to not allow other nonprofits at our fundraising events" WTF??!?!?!?!?!?! Aren't we all "fighting" CF in one way or another??? CFF raises money for research - which I think is VERY important. But I'm in the "business" (not in the traditional sense of the word) of ENSURING THAT THOSE WHO'S LIVES HAVE BEEN EXTENDED DUE TO RESEARCH AND NEW TREATMENTS, ALSO GET TO EXPERIENCE <u><b>QUALITY OF LIFE</b></u>. GRRRRRR, I'm so frustrated right now. It's like they are in competition or something. I made it VERY clear I was NOT there to fundraise.
 
J

julie

New member
I'm sooo frustrated and I don't know where else to vent this frustration, so I hope here is ok. Had a telephone conference with my local CFF chapter this week about setting up a table or something of the sort at the Great strides this year. I simply wanted to hand out flyers about my organiation, and how we help CFers. To let people know WHERE THEY CAN GO FOR ASSISTANCE with stuff like insurance, ins. denials, SSI/SSDI, private short/long term disability, food stamps...and ANYTHING else they need help with (i'll take on ANY type of case!)
<br />
<br />CFF's response... "it is our policy to not allow other nonprofits at our fundraising events" WTF??!?!?!?!?!?! Aren't we all "fighting" CF in one way or another??? CFF raises money for research - which I think is VERY important. But I'm in the "business" (not in the traditional sense of the word) of ENSURING THAT THOSE WHO'S LIVES HAVE BEEN EXTENDED DUE TO RESEARCH AND NEW TREATMENTS, ALSO GET TO EXPERIENCE <u><b>QUALITY OF LIFE</b></u>. GRRRRRR, I'm so frustrated right now. It's like they are in competition or something. I made it VERY clear I was NOT there to fundraise.
 
L

Lex

New member
Makes a person very skeptical regarding motivations and motives.
<br />
<br />This is sad.
 
M

Mommafirst

Guest
Don't they have a symbiotic relationship with Beth Suffian and her hotline? I'd think they'd be eager to forge ties with you and your organization.

And just one more thought....so its okay to have For-Profits at the events, but not not-for-profits? Makes perfect sense to let in people who might be selling to us CF families (The Vest rep and pharmaceuticals are routinely at our events), but not those who offer free services.
 
M

Mommafirst

Guest
Don't they have a symbiotic relationship with Beth Suffian and her hotline? I'd think they'd be eager to forge ties with you and your organization.

And just one more thought....so its okay to have For-Profits at the events, but not not-for-profits? Makes perfect sense to let in people who might be selling to us CF families (The Vest rep and pharmaceuticals are routinely at our events), but not those who offer free services.
 
M

Mommafirst

Guest
Don't they have a symbiotic relationship with Beth Suffian and her hotline? I'd think they'd be eager to forge ties with you and your organization.
<br />
<br />And just one more thought....so its okay to have For-Profits at the events, but not not-for-profits? Makes perfect sense to let in people who might be selling to us CF families (The Vest rep and pharmaceuticals are routinely at our events), but not those who offer free services.
 
J

julie

New member
Yeah, I just don't get the whole thing. I've donated to the CFF in the past, and since I met Mark I have participated in their walks. I just don't understand.

Furthermore, about 5 months ago I wrote a letter the CEO, along with ALL the information about my nonprofit (articles of incorporation, bylaws, IRS 502(c)(3) notification), letters of appreciation from those I've assisted... and asked if they would consider supporting my organization. My operating budget is ~$5000-6000 per year, that's all. I don't pay myself, and up until this year (BEF generously covered my operating costs this year) I've been footing 90%+ of that operating budget. I can't do it anymore, not as a single mom and going through school.

I didn't expect them to be willing to donate/assist (but it never hurts to ask, right?) but I didn't even get a response. I sent it certified return reciept and got my reciept back, AND I contacted his secretary who verified that he recieved it and had reviewed it. And nothing, not even a "no thanks we can't assist". I mean, maybe I'm just super sensitive but isn't that a tad un-professional?

I'm just at a loss..part of me REALLY sees the importance of what they do. Lots of money raised goes to support research, meds and to "find a cure". But if they feel the need to be in competition with other organizations who are also supporting the CF community, what are their true intentions.

I'm glad you guys understand, thanks for listening to the complaining!
 
J

julie

New member
Yeah, I just don't get the whole thing. I've donated to the CFF in the past, and since I met Mark I have participated in their walks. I just don't understand.

Furthermore, about 5 months ago I wrote a letter the CEO, along with ALL the information about my nonprofit (articles of incorporation, bylaws, IRS 502(c)(3) notification), letters of appreciation from those I've assisted... and asked if they would consider supporting my organization. My operating budget is ~$5000-6000 per year, that's all. I don't pay myself, and up until this year (BEF generously covered my operating costs this year) I've been footing 90%+ of that operating budget. I can't do it anymore, not as a single mom and going through school.

I didn't expect them to be willing to donate/assist (but it never hurts to ask, right?) but I didn't even get a response. I sent it certified return reciept and got my reciept back, AND I contacted his secretary who verified that he recieved it and had reviewed it. And nothing, not even a "no thanks we can't assist". I mean, maybe I'm just super sensitive but isn't that a tad un-professional?

I'm just at a loss..part of me REALLY sees the importance of what they do. Lots of money raised goes to support research, meds and to "find a cure". But if they feel the need to be in competition with other organizations who are also supporting the CF community, what are their true intentions.

I'm glad you guys understand, thanks for listening to the complaining!
 
J

julie

New member
Yeah, I just don't get the whole thing. I've donated to the CFF in the past, and since I met Mark I have participated in their walks. I just don't understand.
<br />
<br />Furthermore, about 5 months ago I wrote a letter the CEO, along with ALL the information about my nonprofit (articles of incorporation, bylaws, IRS 502(c)(3) notification), letters of appreciation from those I've assisted... and asked if they would consider supporting my organization. My operating budget is ~$5000-6000 per year, that's all. I don't pay myself, and up until this year (BEF generously covered my operating costs this year) I've been footing 90%+ of that operating budget. I can't do it anymore, not as a single mom and going through school.
<br />
<br />I didn't expect them to be willing to donate/assist (but it never hurts to ask, right?) but I didn't even get a response. I sent it certified return reciept and got my reciept back, AND I contacted his secretary who verified that he recieved it and had reviewed it. And nothing, not even a "no thanks we can't assist". I mean, maybe I'm just super sensitive but isn't that a tad un-professional?
<br />
<br />I'm just at a loss..part of me REALLY sees the importance of what they do. Lots of money raised goes to support research, meds and to "find a cure". But if they feel the need to be in competition with other organizations who are also supporting the CF community, what are their true intentions.
<br />
<br />I'm glad you guys understand, thanks for listening to the complaining!
 
T

tarheel

Guest
What you sum up is basically why I don't support the CFF anymore, personally. I'll help people who want to support the CFF but honestly, I think they're pretty full of it. They've poured millions (if not billions) into giving mice CF. What about the PEOPLE with CF that can't get insurance to pay for their $60 a month vitamins, let alone anything else? And they're doing research that ultimately drug companies will benefit from. Don't tell me the people that make TOBI and Cayston are hurting for money. But then again, I've always been a quality over quantity person. Apparently the CFF isn't.
 
T

tarheel

Guest
What you sum up is basically why I don't support the CFF anymore, personally. I'll help people who want to support the CFF but honestly, I think they're pretty full of it. They've poured millions (if not billions) into giving mice CF. What about the PEOPLE with CF that can't get insurance to pay for their $60 a month vitamins, let alone anything else? And they're doing research that ultimately drug companies will benefit from. Don't tell me the people that make TOBI and Cayston are hurting for money. But then again, I've always been a quality over quantity person. Apparently the CFF isn't.
 
T

tarheel

Guest
What you sum up is basically why I don't support the CFF anymore, personally. I'll help people who want to support the CFF but honestly, I think they're pretty full of it. They've poured millions (if not billions) into giving mice CF. What about the PEOPLE with CF that can't get insurance to pay for their $60 a month vitamins, let alone anything else? And they're doing research that ultimately drug companies will benefit from. Don't tell me the people that make TOBI and Cayston are hurting for money. But then again, I've always been a quality over quantity person. Apparently the CFF isn't.
 
C

Cherylwithone

Guest
Julie, Heather is right. They do have a relationship with Beth Suffian and they pay for to speak at hospitals.

I heard her speak along with Joan Finnegan Brooks. Some of the info was off the mark. Like you can never meet someone with CF if you yourself has cf. My daughter has meet several people with cf and it was the best thing that ever happened. It gave her the fight to make plans etc.

You would think that the CFF would want the extra legal help for people. After all there is alot who need help. An you right we are all in the same fight.

Keep doing what your doing Julie. We would be lost with out here.
 
C

Cherylwithone

Guest
Julie, Heather is right. They do have a relationship with Beth Suffian and they pay for to speak at hospitals.

I heard her speak along with Joan Finnegan Brooks. Some of the info was off the mark. Like you can never meet someone with CF if you yourself has cf. My daughter has meet several people with cf and it was the best thing that ever happened. It gave her the fight to make plans etc.

You would think that the CFF would want the extra legal help for people. After all there is alot who need help. An you right we are all in the same fight.

Keep doing what your doing Julie. We would be lost with out here.
 
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