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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Fundraising
- Thread starter musclemania70
- Start date
musclemania70
New member
So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?
Sounds like a ponzi scheme to me.
Sounds like a ponzi scheme to me.
musclemania70
New member
So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?
Sounds like a ponzi scheme to me.
Sounds like a ponzi scheme to me.
musclemania70
New member
So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?
<br />
<br />Sounds like a ponzi scheme to me.
<br />
<br />Sounds like a ponzi scheme to me.
K
kgfrompa
Guest
I can understand how it is to struggle since I am on a fixed income and its so hard my car is leaking oil and I need to drive 250 miles to my CF doctor. I do try and fundraise each and evey year I do it to help find a cure to help get other drugs to be part of a team that is giving of there self to make a difference to each and every one with CF.I do it because I need to help find a cure to be part of the bigger picture I have Cf and If I dont get money for a funraiser who will?I must say I feel so many acts of kindness and how much I matter when I am asking for help it has brought me to tears to feel the love other have and want to help me on this journey.<br>
K
kgfrompa
Guest
I can understand how it is to struggle since I am on a fixed income and its so hard my car is leaking oil and I need to drive 250 miles to my CF doctor. I do try and fundraise each and evey year I do it to help find a cure to help get other drugs to be part of a team that is giving of there self to make a difference to each and every one with CF.I do it because I need to help find a cure to be part of the bigger picture I have Cf and If I dont get money for a funraiser who will?I must say I feel so many acts of kindness and how much I matter when I am asking for help it has brought me to tears to feel the love other have and want to help me on this journey.<br>
K
kgfrompa
Guest
I can understand how it is to struggle since I am on a fixed income and its so hard my car is leaking oil and I need to drive 250 miles to my CF doctor. I do try and fundraise each and evey year I do it to help find a cure to help get other drugs to be part of a team that is giving of there self to make a difference to each and every one with CF.I do it because I need to help find a cure to be part of the bigger picture I have Cf and If I dont get money for a funraiser who will?I must say I feel so many acts of kindness and how much I matter when I am asking for help it has brought me to tears to feel the love other have and want to help me on this journey.<br>
<div class="FTQUOTE"><begin quote>So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?</end quote></div>
Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
<div class="FTQUOTE"><begin quote>So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?</end quote>
Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
<div class="FTQUOTE"><begin quote>So the millions of dollars that we break our backs to raise money for is going to line the pockets of pharmaceutical companies then?</end quote>
<br />Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
<br />
<br />Who else is going to forward the development of the what... 20? 30? treatments being worked on in the drug pipeline right now? How else is Vertex going to get into the hands of those who NEED it most? It takes hundreds of millions of dollars to go from concept to filling a prescription that can add years to your life. No one else will do it for us and it won't happen for free.
<br />
While the majority of funds raised do go to research the CFF has a patient assistance program in helping to gt patients get cf drugs and equipment. Go here http://www.cfpaf.org/
Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
While the majority of funds raised do go to research the CFF has a patient assistance program in helping to gt patients get cf drugs and equipment. Go here http://www.cfpaf.org/
Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
While the majority of funds raised do go to research the CFF has a patient assistance program in helping to gt patients get cf drugs and equipment. Go here http://www.cfpaf.org/
<br />
<br />Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
<br />
<br />Additionally, your cf social worker may be able to hook you up with a grocery store or gas card to help you through an especially difficult time in your life. We all want to see each patient eat and see their doctor! While taking all the necessary meds is great, sometimes financial situations can keep patients from being able to. The drug companies have the patient assistant programs to help these patients.
Preachin to the choir Musclemania! This has been my #1 beef with the foundation for several years now. Great, so they fund all these awesome meds and great research that PROLONGS the life of CFers. I think that is wonderful. BUT, not so wonderful when the QUALITY OF LIFE goes down the shi**er because there aren't enough FINANCIAL SUPPORT programs available when.
So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
Preachin to the choir Musclemania! This has been my #1 beef with the foundation for several years now. Great, so they fund all these awesome meds and great research that PROLONGS the life of CFers. I think that is wonderful. BUT, not so wonderful when the QUALITY OF LIFE goes down the shi**er because there aren't enough FINANCIAL SUPPORT programs available when.
So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
Preachin to the choir Musclemania! This has been my #1 beef with the foundation for several years now. Great, so they fund all these awesome meds and great research that PROLONGS the life of CFers. I think that is wonderful. BUT, not so wonderful when the QUALITY OF LIFE goes down the shi**er because there aren't enough FINANCIAL SUPPORT programs available when.
<br />
<br />So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
<br />
<br />If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
<br />
<br />Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
<br />
<br />Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
<br />
<br />So, if you need help fighting for food stamp benefits and using your EXCESS FOOD EXPENSES as a medical expense to qualify... you just call me. I sent a presedence in the state of WA, and carried it over to CA in getting such a verdict from an administrative law judge.
<br />
<br />If you need help finding a loophole to try and get state medical coverage, or to get SSDI/SSI benefits, or anything else we might be able to think of to assist you, CONTACT ME. I'm NOT a CEO paid $400,000+ PER YEAR to sit at a desk and make some executive decisions. Furthermore, each year I use about $2500 of MY OWN MONEY to fund www.dafcf.org, and I'm a single mom with 3 young kids living UNDER THE POVERTY LEVEL.
<br />
<br />Ugggg, sorry, but anytime this foundation gets brought up lately I just fly off the handle. I'm so sick of the lack of anything they do DIRECTLY for those living the longer lives with CF. I asked to work hand in hand with them, to be part of their team and recieve NO compensation for it. To offer my services as a part of the CFF...and they declined.
<br />
<br />Most certainly leads me to believe that they do NOT have the patients best interest in mind at all.
<P>I've been going to an adult CF clinic for about 8 years now, and in that time I've seen great improvements in the care that I receive and this is due to CFF, which mandated many changes. Now, instead of just meeting with a CF doc, CFF requires that all patients also see a nutritionist, a social worker (who can help patients obtain benefits/assistance and also checks in re: emotional well-being) and a physical therapist who helps patients learn natural airway clearance techniques. The physical therapist even checks in regarding any joint inflammation that can happen with CF and has referred me for additional PT to help ensure knee problems etc., won't interfere with exercise, which is very important for airway clearance.</P>
<P> </P>
<P>I don't know if others have noticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients access necessary supplies and medications. I do understand that this is an area of great need. </P>
<P> </P>
<P>I don't know if others have noticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients access necessary supplies and medications. I do understand that this is an area of great need. </P>
<P>I've been going to an adult CF clinic for about 8 years now, and in that time I've seen great improvements in the care that I receive and this is due to CFF, which mandated many changes. Now, instead of just meeting with a CF doc, CFF requires that all patients also see a nutritionist, a social worker (who can help patients obtain benefits/assistance and also checks in re: emotional well-being) and a physical therapist who helps patients learn natural airway clearance techniques. The physical therapist even checks in regarding any joint inflammation that can happen with CF and has referred me for additional PT to help ensureknee problems etc., won't interfere with exercise, which is very important for airway clearance.</P>
<P></P>
<P>I don't know ifothers havenoticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients accessnecessary supplies and medications. I do understand thatthis is an area of great need. </P>
<P></P>
<P>I don't know ifothers havenoticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients accessnecessary supplies and medications. I do understand thatthis is an area of great need. </P>
<P><BR>I've been going to an adult CF clinic for about 8 years now, and in that time I've seen great improvements in the care that I receive and this is due to CFF, which mandated many changes. Now, instead of just meeting with a CF doc, CFF requires that all patients also see a nutritionist, a social worker (who can help patients obtain benefits/assistance and also checks in re: emotional well-being) and a physical therapist who helps patients learn natural airway clearance techniques. The physical therapist even checks in regarding any joint inflammation that can happen with CF and has referred me for additional PT to help ensureknee problems etc., won't interfere with exercise, which is very important for airway clearance.</P>
<P></P>
<P>I don't know ifothers havenoticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients accessnecessary supplies and medications. I do understand thatthis is an area of great need. </P>
<P></P>
<P>I don't know ifothers havenoticed these changes or not, but I feel that CFF is using their money wisely if advances are being made in research and in the care offered at clinics. Hopefully other resources will continue to be available to help patients accessnecessary supplies and medications. I do understand thatthis is an area of great need. </P>