Fundraising-how did you do it?

[dsarver]

I am very close to being listed for bilateral lung transplant and have questions about fundraising. I never knew it was such a complex issue.

Several friends have said they want to hold fundraisers to help offset the costs. Apparently it is advisable to deal with one of the transplant fundraising organizations that are listed on some of the CF sites. For tax reasons etc.

I spoke to one today and found that they take 4 cents of every dollar raised...no problem I guess. They handle the fund and you have to submit a request to them with copy of bill etc for any of the money. I guess I can see this too so the money is used as intended.

But what does bother me is that if I die (during transplant or soon after) and any money is left after 6 months, all the money goes to them (the company). None can go to my husband to help with other bills we incurred (not necessarily transplant related but in existance because of the transplant process (lost wages etc)

What I want to know is what those of you who have had transplants, or are in process, have done for fundraising -ideas and legal issues. Also do you have suggestions for which company to use?
Thanks,

Dawn, 45, CF, MAC, retired nurse practitioner, married 25 yrs. dtr 20 yrs old-no cf

 

[dsarver]

I am very close to being listed for bilateral lung transplant and have questions about fundraising. I never knew it was such a complex issue.

Several friends have said they want to hold fundraisers to help offset the costs. Apparently it is advisable to deal with one of the transplant fundraising organizations that are listed on some of the CF sites. For tax reasons etc.

I spoke to one today and found that they take 4 cents of every dollar raised...no problem I guess. They handle the fund and you have to submit a request to them with copy of bill etc for any of the money. I guess I can see this too so the money is used as intended.

But what does bother me is that if I die (during transplant or soon after) and any money is left after 6 months, all the money goes to them (the company). None can go to my husband to help with other bills we incurred (not necessarily transplant related but in existance because of the transplant process (lost wages etc)

What I want to know is what those of you who have had transplants, or are in process, have done for fundraising -ideas and legal issues. Also do you have suggestions for which company to use?
Thanks,

Dawn, 45, CF, MAC, retired nurse practitioner, married 25 yrs. dtr 20 yrs old-no cf

 

[dsarver]

I am very close to being listed for bilateral lung transplant and have questions about fundraising. I never knew it was such a complex issue.

Several friends have said they want to hold fundraisers to help offset the costs. Apparently it is advisable to deal with one of the transplant fundraising organizations that are listed on some of the CF sites. For tax reasons etc.

I spoke to one today and found that they take 4 cents of every dollar raised...no problem I guess. They handle the fund and you have to submit a request to them with copy of bill etc for any of the money. I guess I can see this too so the money is used as intended.

But what does bother me is that if I die (during transplant or soon after) and any money is left after 6 months, all the money goes to them (the company). None can go to my husband to help with other bills we incurred (not necessarily transplant related but in existance because of the transplant process (lost wages etc)

What I want to know is what those of you who have had transplants, or are in process, have done for fundraising -ideas and legal issues. Also do you have suggestions for which company to use?
Thanks,

Dawn, 45, CF, MAC, retired nurse practitioner, married 25 yrs. dtr 20 yrs old-no cf

 

[dsarver]

I am very close to being listed for bilateral lung transplant and have questions about fundraising. I never knew it was such a complex issue.

Several friends have said they want to hold fundraisers to help offset the costs. Apparently it is advisable to deal with one of the transplant fundraising organizations that are listed on some of the CF sites. For tax reasons etc.

I spoke to one today and found that they take 4 cents of every dollar raised...no problem I guess. They handle the fund and you have to submit a request to them with copy of bill etc for any of the money. I guess I can see this too so the money is used as intended.

But what does bother me is that if I die (during transplant or soon after) and any money is left after 6 months, all the money goes to them (the company). None can go to my husband to help with other bills we incurred (not necessarily transplant related but in existance because of the transplant process (lost wages etc)

What I want to know is what those of you who have had transplants, or are in process, have done for fundraising -ideas and legal issues. Also do you have suggestions for which company to use?
Thanks,

Dawn, 45, CF, MAC, retired nurse practitioner, married 25 yrs. dtr 20 yrs old-no cf

 

[dsarver]

I am very close to being listed for bilateral lung transplant and have questions about fundraising. I never knew it was such a complex issue.
<br />
<br />Several friends have said they want to hold fundraisers to help offset the costs. Apparently it is advisable to deal with one of the transplant fundraising organizations that are listed on some of the CF sites. For tax reasons etc.
<br />
<br />I spoke to one today and found that they take 4 cents of every dollar raised...no problem I guess. They handle the fund and you have to submit a request to them with copy of bill etc for any of the money. I guess I can see this too so the money is used as intended.
<br />
<br />But what does bother me is that if I die (during transplant or soon after) and any money is left after 6 months, all the money goes to them (the company). None can go to my husband to help with other bills we incurred (not necessarily transplant related but in existance because of the transplant process (lost wages etc)
<br />
<br />What I want to know is what those of you who have had transplants, or are in process, have done for fundraising -ideas and legal issues. Also do you have suggestions for which company to use?
<br />Thanks,
<br />
<br />Dawn, 45, CF, MAC, retired nurse practitioner, married 25 yrs. dtr 20 yrs old-no cf

 

[Scars]

you dont have insurance? my insurance paid for everything

 

[Scars]

you dont have insurance? my insurance paid for everything

 

[Scars]

you dont have insurance? my insurance paid for everything

 

[Scars]

you dont have insurance? my insurance paid for everything

 

[Scars]

you dont have insurance? my insurance paid for everything

 

[dsarver]

I have Medicare which pays 80% and i have a secondary that will cover some of the remaining 20% and it has a $5000.00 deductable. My big concern is that I live about 2.5 hrs from the tx center so after the tx I (and a caregiver) need to stay in the area for at least 6 weeks (prob. longer according to most people.). Insurance will not cover lodging, food, etc for that time so I will need some assistance with that as well. (esp if my husband has to go out of work to care for me)
I am probably panicing (sp?) and will learn more when I meet with the social worker and financial person at Duke in the nex few weeks.
It is just all so overwhelming. we already live on a shoestring budget b/c I can't work, dtr in college, medicine co-pays etc and I am having a hard time seeing how we will pay for the added expenses of tx.
Dawn

 

[dsarver]

I have Medicare which pays 80% and i have a secondary that will cover some of the remaining 20% and it has a $5000.00 deductable. My big concern is that I live about 2.5 hrs from the tx center so after the tx I (and a caregiver) need to stay in the area for at least 6 weeks (prob. longer according to most people.). Insurance will not cover lodging, food, etc for that time so I will need some assistance with that as well. (esp if my husband has to go out of work to care for me)
I am probably panicing (sp?) and will learn more when I meet with the social worker and financial person at Duke in the nex few weeks.
It is just all so overwhelming. we already live on a shoestring budget b/c I can't work, dtr in college, medicine co-pays etc and I am having a hard time seeing how we will pay for the added expenses of tx.
Dawn

 

[dsarver]

I have Medicare which pays 80% and i have a secondary that will cover some of the remaining 20% and it has a $5000.00 deductable. My big concern is that I live about 2.5 hrs from the tx center so after the tx I (and a caregiver) need to stay in the area for at least 6 weeks (prob. longer according to most people.). Insurance will not cover lodging, food, etc for that time so I will need some assistance with that as well. (esp if my husband has to go out of work to care for me)
I am probably panicing (sp?) and will learn more when I meet with the social worker and financial person at Duke in the nex few weeks.
It is just all so overwhelming. we already live on a shoestring budget b/c I can't work, dtr in college, medicine co-pays etc and I am having a hard time seeing how we will pay for the added expenses of tx.
Dawn

 

[dsarver]

I have Medicare which pays 80% and i have a secondary that will cover some of the remaining 20% and it has a $5000.00 deductable. My big concern is that I live about 2.5 hrs from the tx center so after the tx I (and a caregiver) need to stay in the area for at least 6 weeks (prob. longer according to most people.). Insurance will not cover lodging, food, etc for that time so I will need some assistance with that as well. (esp if my husband has to go out of work to care for me)
I am probably panicing (sp?) and will learn more when I meet with the social worker and financial person at Duke in the nex few weeks.
It is just all so overwhelming. we already live on a shoestring budget b/c I can't work, dtr in college, medicine co-pays etc and I am having a hard time seeing how we will pay for the added expenses of tx.
Dawn

 

[dsarver]

I have Medicare which pays 80% and i have a secondary that will cover some of the remaining 20% and it has a $5000.00 deductable. My big concern is that I live about 2.5 hrs from the tx center so after the tx I (and a caregiver) need to stay in the area for at least 6 weeks (prob. longer according to most people.). Insurance will not cover lodging, food, etc for that time so I will need some assistance with that as well. (esp if my husband has to go out of work to care for me)
<br />I am probably panicing (sp?) and will learn more when I meet with the social worker and financial person at Duke in the nex few weeks.
<br />It is just all so overwhelming. we already live on a shoestring budget b/c I can't work, dtr in college, medicine co-pays etc and I am having a hard time seeing how we will pay for the added expenses of tx.
<br />Dawn

 

[Transplantmommy]

I have insureance through my husband's work and there was still a lot that they didn't pay for (especially since my transplant was right at the beginning of the year). We had about $10,000 to pay for te three medical flights that I had, money for the hotel stays (I live 6 hours from my clinic), meds, co-pays, co-insurance and deductibles, and then living expenses when we had to stay in the Cleveland area after the Tx.

We did not go through any of the companies that you are looking at. We just had a seperate bank accout for the benefit fund and we have all of the bank statements to prove where all of the money went. All together with all of the money that was raised (roughly $16,000), there is only $20 left and we are still paying medical bills. It definitely expensive!

My family and friends have done a few things for me plus there is a car site that my husband is on where the owner of the site raised money for us from other members of the site. My friend has put together two fundraisers where she had bands donate their time for entertainment and then she charged like $5 to get in, charged like $1 for food and drink items, and then had items donated to raffle or auction off. My sister had a lot of people donate items to a yard sale and then she had this HUGE yard sale and all of the money went into my benefit account. When I was working, my co-workers put together and sold lunches at work and they took the money out that it cost them to buy the food, and then the rest went into a benefit account. We did pretty well with these fundraisers. I still have all of my medical bills, receipts for medications, receipts for hotel stays, plus all of the bank statements to back up where all of the money was spent. We have also spent a great deal of our own money too. Transplants are definitely not cheap, even with insurance.

My stay in Cleveland after I got out of the hospital was supposed to be 6 weeks (like most people) and it ended up only being 2.5 weeks. I was really lucky!! We had that suite for a month though. My family stayed there during the time that I was in the hospital for the 2 weeks that I was. We did not pay for this though. It cost a total of $1,500 but my Aunt had the idea to try to get the suite paid for by applying for money through the Boomer Esiasen (sp) Foundation. They would have paid up to $5,000 I think. We were approved for the money, they paid for the room, and we don't have to pay it back. That was a GREAT help!

Anyway, I hope that this gives you some ideas! If you need details on anything, send me a PM.

 

[Transplantmommy]

I have insureance through my husband's work and there was still a lot that they didn't pay for (especially since my transplant was right at the beginning of the year). We had about $10,000 to pay for te three medical flights that I had, money for the hotel stays (I live 6 hours from my clinic), meds, co-pays, co-insurance and deductibles, and then living expenses when we had to stay in the Cleveland area after the Tx.

We did not go through any of the companies that you are looking at. We just had a seperate bank accout for the benefit fund and we have all of the bank statements to prove where all of the money went. All together with all of the money that was raised (roughly $16,000), there is only $20 left and we are still paying medical bills. It definitely expensive!

My family and friends have done a few things for me plus there is a car site that my husband is on where the owner of the site raised money for us from other members of the site. My friend has put together two fundraisers where she had bands donate their time for entertainment and then she charged like $5 to get in, charged like $1 for food and drink items, and then had items donated to raffle or auction off. My sister had a lot of people donate items to a yard sale and then she had this HUGE yard sale and all of the money went into my benefit account. When I was working, my co-workers put together and sold lunches at work and they took the money out that it cost them to buy the food, and then the rest went into a benefit account. We did pretty well with these fundraisers. I still have all of my medical bills, receipts for medications, receipts for hotel stays, plus all of the bank statements to back up where all of the money was spent. We have also spent a great deal of our own money too. Transplants are definitely not cheap, even with insurance.

My stay in Cleveland after I got out of the hospital was supposed to be 6 weeks (like most people) and it ended up only being 2.5 weeks. I was really lucky!! We had that suite for a month though. My family stayed there during the time that I was in the hospital for the 2 weeks that I was. We did not pay for this though. It cost a total of $1,500 but my Aunt had the idea to try to get the suite paid for by applying for money through the Boomer Esiasen (sp) Foundation. They would have paid up to $5,000 I think. We were approved for the money, they paid for the room, and we don't have to pay it back. That was a GREAT help!

Anyway, I hope that this gives you some ideas! If you need details on anything, send me a PM.

 

[Transplantmommy]

I have insureance through my husband's work and there was still a lot that they didn't pay for (especially since my transplant was right at the beginning of the year). We had about $10,000 to pay for te three medical flights that I had, money for the hotel stays (I live 6 hours from my clinic), meds, co-pays, co-insurance and deductibles, and then living expenses when we had to stay in the Cleveland area after the Tx.

We did not go through any of the companies that you are looking at. We just had a seperate bank accout for the benefit fund and we have all of the bank statements to prove where all of the money went. All together with all of the money that was raised (roughly $16,000), there is only $20 left and we are still paying medical bills. It definitely expensive!

My family and friends have done a few things for me plus there is a car site that my husband is on where the owner of the site raised money for us from other members of the site. My friend has put together two fundraisers where she had bands donate their time for entertainment and then she charged like $5 to get in, charged like $1 for food and drink items, and then had items donated to raffle or auction off. My sister had a lot of people donate items to a yard sale and then she had this HUGE yard sale and all of the money went into my benefit account. When I was working, my co-workers put together and sold lunches at work and they took the money out that it cost them to buy the food, and then the rest went into a benefit account. We did pretty well with these fundraisers. I still have all of my medical bills, receipts for medications, receipts for hotel stays, plus all of the bank statements to back up where all of the money was spent. We have also spent a great deal of our own money too. Transplants are definitely not cheap, even with insurance.

My stay in Cleveland after I got out of the hospital was supposed to be 6 weeks (like most people) and it ended up only being 2.5 weeks. I was really lucky!! We had that suite for a month though. My family stayed there during the time that I was in the hospital for the 2 weeks that I was. We did not pay for this though. It cost a total of $1,500 but my Aunt had the idea to try to get the suite paid for by applying for money through the Boomer Esiasen (sp) Foundation. They would have paid up to $5,000 I think. We were approved for the money, they paid for the room, and we don't have to pay it back. That was a GREAT help!

Anyway, I hope that this gives you some ideas! If you need details on anything, send me a PM.

 

[Transplantmommy]

I have insureance through my husband's work and there was still a lot that they didn't pay for (especially since my transplant was right at the beginning of the year). We had about $10,000 to pay for te three medical flights that I had, money for the hotel stays (I live 6 hours from my clinic), meds, co-pays, co-insurance and deductibles, and then living expenses when we had to stay in the Cleveland area after the Tx.

We did not go through any of the companies that you are looking at. We just had a seperate bank accout for the benefit fund and we have all of the bank statements to prove where all of the money went. All together with all of the money that was raised (roughly $16,000), there is only $20 left and we are still paying medical bills. It definitely expensive!

My family and friends have done a few things for me plus there is a car site that my husband is on where the owner of the site raised money for us from other members of the site. My friend has put together two fundraisers where she had bands donate their time for entertainment and then she charged like $5 to get in, charged like $1 for food and drink items, and then had items donated to raffle or auction off. My sister had a lot of people donate items to a yard sale and then she had this HUGE yard sale and all of the money went into my benefit account. When I was working, my co-workers put together and sold lunches at work and they took the money out that it cost them to buy the food, and then the rest went into a benefit account. We did pretty well with these fundraisers. I still have all of my medical bills, receipts for medications, receipts for hotel stays, plus all of the bank statements to back up where all of the money was spent. We have also spent a great deal of our own money too. Transplants are definitely not cheap, even with insurance.

My stay in Cleveland after I got out of the hospital was supposed to be 6 weeks (like most people) and it ended up only being 2.5 weeks. I was really lucky!! We had that suite for a month though. My family stayed there during the time that I was in the hospital for the 2 weeks that I was. We did not pay for this though. It cost a total of $1,500 but my Aunt had the idea to try to get the suite paid for by applying for money through the Boomer Esiasen (sp) Foundation. They would have paid up to $5,000 I think. We were approved for the money, they paid for the room, and we don't have to pay it back. That was a GREAT help!

Anyway, I hope that this gives you some ideas! If you need details on anything, send me a PM.

 

[Transplantmommy]

I have insureance through my husband's work and there was still a lot that they didn't pay for (especially since my transplant was right at the beginning of the year). We had about $10,000 to pay for te three medical flights that I had, money for the hotel stays (I live 6 hours from my clinic), meds, co-pays, co-insurance and deductibles, and then living expenses when we had to stay in the Cleveland area after the Tx.
<br />
<br />We did not go through any of the companies that you are looking at. We just had a seperate bank accout for the benefit fund and we have all of the bank statements to prove where all of the money went. All together with all of the money that was raised (roughly $16,000), there is only $20 left and we are still paying medical bills. It definitely expensive!
<br />
<br />My family and friends have done a few things for me plus there is a car site that my husband is on where the owner of the site raised money for us from other members of the site. My friend has put together two fundraisers where she had bands donate their time for entertainment and then she charged like $5 to get in, charged like $1 for food and drink items, and then had items donated to raffle or auction off. My sister had a lot of people donate items to a yard sale and then she had this HUGE yard sale and all of the money went into my benefit account. When I was working, my co-workers put together and sold lunches at work and they took the money out that it cost them to buy the food, and then the rest went into a benefit account. We did pretty well with these fundraisers. I still have all of my medical bills, receipts for medications, receipts for hotel stays, plus all of the bank statements to back up where all of the money was spent. We have also spent a great deal of our own money too. Transplants are definitely not cheap, even with insurance.
<br />
<br />My stay in Cleveland after I got out of the hospital was supposed to be 6 weeks (like most people) and it ended up only being 2.5 weeks. I was really lucky!! We had that suite for a month though. My family stayed there during the time that I was in the hospital for the 2 weeks that I was. We did not pay for this though. It cost a total of $1,500 but my Aunt had the idea to try to get the suite paid for by applying for money through the Boomer Esiasen (sp) Foundation. They would have paid up to $5,000 I think. We were approved for the money, they paid for the room, and we don't have to pay it back. That was a GREAT help!
<br />
<br />Anyway, I hope that this gives you some ideas! If you need details on anything, send me a PM.