Fundraising

M

musclemania70

New member
<P>If the Foundation wants people to fundraise, what portion of those monies get spent helping pay for the expenses of patients?</P>
<P>The Foundation wants people to fundraise, and then when patients ask for help, refers us to programs that are not funded directly by them. </P>
<P> </P>
<P>See their website. Under Patient assitance programs, it lists other THIRD party organizations/gov't programs for finding help. </P>
<P>Oh yeah, and a lawyer that cannot do anything except tell YOU how to hire her for help.</P>
<P> </P>
<P>So when they guilt people into fundraising and begging people for more money, </P>
<P>how many people or patients have actually received direct financial help from the Foundation or been given access to medical equipment that is required for CF patients to stay healthy??</P>
<P> </P>
<P>Does anyone else have this problem or concern?</P>
<P> </P>
<P>I want to know how the FOUNDATION can help me pay for the device that I need to stay healthy if my insurance only pays a part of it...</P>
<P>Since I have raised money for the CF Foundation, I want to know how THEY are going to help me pay for things that I need help with NOW. </P>
<P>AND NOT PASS ME OFF TO A THIRD PARTY ASSISTANCE PROGRAM OR GOV'T AGENCY. </P>
<P>WHAT ARE WE RAISING MONEY FOR IF WE CAN'T HELP EXISTING PATIENTS GET THE TREATMENTS OR MEDICATIONS THEY NEED TODAY???</P>
<P> </P>
<P> </P>
 
M

musclemania70

New member
<P>If the Foundation wants people to fundraise, what portion of those monies get spent helping pay for the expenses of patients?</P>
<P>The Foundation wants people to fundraise, and then whenpatients ask for help,refers usto programs that are not funded directly by them. </P>
<P></P>
<P>See their website. Under Patient assitance programs, it lists other THIRD party organizations/gov't programs for finding help. </P>
<P>Oh yeah, and a lawyer that cannot do anything except tell YOU how to hire her for help.</P>
<P></P>
<P>So when they guilt people into fundraising and begging people for more money, </P>
<P>how many people or patients have actually received direct financial help from the Foundation orbeen givenaccess to medical equipment that is required for CF patients to stay healthy??</P>
<P></P>
<P>Does anyone else have this problem or concern?</P>
<P></P>
<P>I want to know how the FOUNDATION can help me pay for the device that I need to stay healthy if my insurance only pays a part of it...</P>
<P>Since I have raised money for the CF Foundation, I want to know how THEY are going to help me pay for things that I need help with NOW. </P>
<P>AND NOT PASS ME OFF TO A THIRD PARTY ASSISTANCE PROGRAM OR GOV'T AGENCY. </P>
<P>WHAT ARE WE RAISING MONEY FOR IF WE CAN'T HELP EXISTING PATIENTS GET THE TREATMENTS OR MEDICATIONS THEY NEED TODAY???</P>
<P></P>
<P></P>
 
M

musclemania70

New member
<P><BR>If the Foundation wants people to fundraise, what portion of those monies get spent helping pay for the expenses of patients?</P>
<P>The Foundation wants people to fundraise, and then whenpatients ask for help,refers usto programs that are not funded directly by them. </P>
<P></P>
<P>See their website. Under Patient assitance programs, it lists other THIRD party organizations/gov't programs for finding help. </P>
<P>Oh yeah, and a lawyer that cannot do anything except tell YOU how to hire her for help.</P>
<P></P>
<P>So when they guilt people into fundraising and begging people for more money, </P>
<P>how many people or patients have actually received direct financial help from the Foundation orbeen givenaccess to medical equipment that is required for CF patients to stay healthy??</P>
<P></P>
<P>Does anyone else have this problem or concern?</P>
<P></P>
<P>I want to know how the FOUNDATION can help me pay for the device that I need to stay healthy if my insurance only pays a part of it...</P>
<P>Since I have raised money for the CF Foundation, I want to know how THEY are going to help me pay for things that I need help with NOW. </P>
<P>AND NOT PASS ME OFF TO A THIRD PARTY ASSISTANCE PROGRAM OR GOV'T AGENCY. </P>
<P>WHAT ARE WE RAISING MONEY FOR IF WE CAN'T HELP EXISTING PATIENTS GET THE TREATMENTS OR MEDICATIONS THEY NEED TODAY???</P>
<P></P>
<P></P>
 
T

TonyaH

Guest
Direct patient assistance has never been the mission of the CF Foundation. The CF Foundation raises money to fund research toward effective treatments that improve the quality of life for CFers. When we fundraise, we are funding therapeutic development programs and research.
 
T

TonyaH

Guest
Direct patient assistance has never been the mission of the CF Foundation. The CF Foundation raises money to fund research toward effective treatments that improve the quality of life for CFers. When we fundraise, we are funding therapeutic development programs and research.
 
T

TonyaH

Guest
Direct patient assistance has never been the mission of the CF Foundation. The CF Foundation raises money to fund research toward effective treatments that improve the quality of life for CFers. When we fundraise, we are funding therapeutic development programs and research.
<br />
<br />
 
M

Mommafirst

Guest
The CFF is pretty direct that the VAST majority of the money they raise goes directly towards research for better medicines or a cure. I'm so sorry you are struggling to pay for what you need....I get your frustration, but when I've raised money for the CFF I've done so knowing full well where the money was going....and where it isn't. Do try to work with the companies patient assistance programs, many of them will help a good deal for those in need.
 
M

Mommafirst

Guest
The CFF is pretty direct that the VAST majority of the money they raise goes directly towards research for better medicines or a cure. I'm so sorry you are struggling to pay for what you need....I get your frustration, but when I've raised money for the CFF I've done so knowing full well where the money was going....and where it isn't. Do try to work with the companies patient assistance programs, many of them will help a good deal for those in need.
 
M

Mommafirst

Guest
The CFF is pretty direct that the VAST majority of the money they raise goes directly towards research for better medicines or a cure. I'm so sorry you are struggling to pay for what you need....I get your frustration, but when I've raised money for the CFF I've done so knowing full well where the money was going....and where it isn't. Do try to work with the companies patient assistance programs, many of them will help a good deal for those in need.
 
T

TleighsHusband

Guest
The assistance programs were a huge help to us, and I found them very helpful. Although we never got equipment through them, they helped us tremendously with the meds as our co-pay with our insurance for the specialty drugs was outrageous. They did take some time to set up, but once it was set up it was very easy and dependable. They saved us thousands of dollars.
 
T

TleighsHusband

Guest
The assistance programs were a huge help to us, and I found them very helpful. Although we never got equipment through them, they helped us tremendously with the meds as our co-pay with our insurance for the specialty drugs was outrageous. They did take some time to set up, but once it was set up it was very easy and dependable. They saved us thousands of dollars.
 
T

TleighsHusband

Guest
The assistance programs were a huge help to us, and I found them very helpful. Although we never got equipment through them, they helped us tremendously with the meds as our co-pay with our insurance for the specialty drugs was outrageous. They did take some time to set up, but once it was set up it was very easy and dependable. They saved us thousands of dollars.
 
M

musclemania70

New member
Improving the quality of life as a goal of the Foundation would mean helping the patient to get access to the treatments they have made available. There is no point in doing research and finding treatments if people can't access them or they are too costly to obtain. Patients need help TODAY not 5 years in the future.

I may not have difficulty accessing my medications but I know there are people on here all the time struggling to pay for things they need. And all the while these patients are raising money for an organization that isn't helping them obtain the treatments or the direct assistance they need to survive.

No?
 
M

musclemania70

New member
Improving the quality of life as a goal of the Foundation would mean helping the patient to get access to the treatments they have made available. There is no point in doing research and finding treatments if people can't access them or they are too costly to obtain. Patients need help TODAY not 5 years in the future.

I may not have difficulty accessing my medications but I know there are people on here all the time struggling to pay for things they need. And all the while these patients are raising money for an organization that isn't helping them obtain the treatments or the direct assistance they need to survive.

No?
 
M

musclemania70

New member
Improving the quality of life as a goal of the Foundation would mean helping the patient to get access to the treatments they have made available. There is no point in doing research and finding treatments if people can't access them or they are too costly to obtain. Patients need help TODAY not 5 years in the future.
<br />
<br />I may not have difficulty accessing my medications but I know there are people on here all the time struggling to pay for things they need. And all the while these patients are raising money for an organization that isn't helping them obtain the treatments or the direct assistance they need to survive.
<br />
<br />No?
 
T

TonyaH

Guest
I guess I don't look at it that way. I don't expect the Foundation to help me personally purchase my son's medical supplies and prescriptions. Do you realize that if the Foundation stopped what they are doing right now...if they took money away from research and started paying for individual patient needs...then CF would always be what it is today. There would be little advancement in the improvement of QOL, projects like VX770 would take decades longer to compete (and in most cases would never see completion because what pharmaceutical company is going to invest in a project with such a long timeline?)....

I am not saying the CF community would not benefit from more organizations that provide patient assistance. I know there are many of them already around...being the assistance programs you find through the CFF website, or the smaller, grass-roots organizations that are run locally, that provide financial help to transplant recipients, families who cannot afford medication, etc. But the CFF is not one such organization. Never has been, never will be. (until a cure is found, at which time I do see the Foundation changing their mission statement to providing support to the families of CF patients by helping them afford the medications created by their years of hard work and dedication to fighting this disease.)

Looking back, if the Foundation had not kept true to its mission statement from day one....if the money raised early on was spent aiding families who lost their children at age 5, or 8, or 10 rather than put toward science to learn how to fight this battle and keep families from losing their precious children at such a young age,....then my son would very likely not be 13 right now. He would very likely not be planning to go to college, get married, have a family.... and that is so much more important to me than having a one-months supply of pulmozyme 'gifted' to me by the CFF from time to time.
 
T

TonyaH

Guest
I guess I don't look at it that way. I don't expect the Foundation to help me personally purchase my son's medical supplies and prescriptions. Do you realize that if the Foundation stopped what they are doing right now...if they took money away from research and started paying for individual patient needs...then CF would always be what it is today. There would be little advancement in the improvement of QOL, projects like VX770 would take decades longer to compete (and in most cases would never see completion because what pharmaceutical company is going to invest in a project with such a long timeline?)....

I am not saying the CF community would not benefit from more organizations that provide patient assistance. I know there are many of them already around...being the assistance programs you find through the CFF website, or the smaller, grass-roots organizations that are run locally, that provide financial help to transplant recipients, families who cannot afford medication, etc. But the CFF is not one such organization. Never has been, never will be. (until a cure is found, at which time I do see the Foundation changing their mission statement to providing support to the families of CF patients by helping them afford the medications created by their years of hard work and dedication to fighting this disease.)

Looking back, if the Foundation had not kept true to its mission statement from day one....if the money raised early on was spent aiding families who lost their children at age 5, or 8, or 10 rather than put toward science to learn how to fight this battle and keep families from losing their precious children at such a young age,....then my son would very likely not be 13 right now. He would very likely not be planning to go to college, get married, have a family.... and that is so much more important to me than having a one-months supply of pulmozyme 'gifted' to me by the CFF from time to time.
 
T

TonyaH

Guest
I guess I don't look at it that way. I don't expect the Foundation to help me personally purchase my son's medical supplies and prescriptions. Do you realize that if the Foundation stopped what they are doing right now...if they took money away from research and started paying for individual patient needs...then CF would always be what it is today. There would be little advancement in the improvement of QOL, projects like VX770 would take decades longer to compete (and in most cases would never see completion because what pharmaceutical company is going to invest in a project with such a long timeline?)....
<br />
<br />I am not saying the CF community would not benefit from more organizations that provide patient assistance. I know there are many of them already around...being the assistance programs you find through the CFF website, or the smaller, grass-roots organizations that are run locally, that provide financial help to transplant recipients, families who cannot afford medication, etc. But the CFF is not one such organization. Never has been, never will be. (until a cure is found, at which time I do see the Foundation changing their mission statement to providing support to the families of CF patients by helping them afford the medications created by their years of hard work and dedication to fighting this disease.)
<br />
<br />Looking back, if the Foundation had not kept true to its mission statement from day one....if the money raised early on was spent aiding families who lost their children at age 5, or 8, or 10 rather than put toward science to learn how to fight this battle and keep families from losing their precious children at such a young age,....then my son would very likely not be 13 right now. He would very likely not be planning to go to college, get married, have a family.... and that is so much more important to me than having a one-months supply of pulmozyme 'gifted' to me by the CFF from time to time.
<br />
<br />
 
H

Havoc

New member
In Pa we have a state CF program that you can join if you qualify. I don't know if any other states have a comparable program. They offer discounted medications, but usually require you to use a larger pharmacy such as the CF services pharmacy. Also, if your clinic is associated with a hospital system, often they can provide assistance through the hospital pharmacy.
 
H

Havoc

New member
In Pa we have a state CF program that you can join if you qualify. I don't know if any other states have a comparable program. They offer discounted medications, but usually require you to use a larger pharmacy such as the CF services pharmacy. Also, if your clinic is associated with a hospital system, often they can provide assistance through the hospital pharmacy.
 
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