Fundraising for Transplant

[jerry]

Hi everyone,

I am working on a brochure for the Boomer Esiason Foundation to bring awareness to the importance of fundraising EARLY for double lung transplants. With the new allocation system most people with CF are not informed soon enough and therefore do not have enough time to do fundraising to help with a lot of the costs.

Let me know your thoughts and when - in your opinion do you think you should start the process for fundraising...
I personally believe that this process should start before you are even listed as your condition with CF starts to progress and maybe your CF Center/doctor should approach the subject...

I would love to here your thoughts & suggestions for the brochure

Regards
Jerry
jcahillBEF@aol.com

-------------------------
"Exercise For Life"

 

[jerry]

Hi everyone,

I am working on a brochure for the Boomer Esiason Foundation to bring awareness to the importance of fundraising EARLY for double lung transplants. With the new allocation system most people with CF are not informed soon enough and therefore do not have enough time to do fundraising to help with a lot of the costs.

Let me know your thoughts and when - in your opinion do you think you should start the process for fundraising...
I personally believe that this process should start before you are even listed as your condition with CF starts to progress and maybe your CF Center/doctor should approach the subject...

I would love to here your thoughts & suggestions for the brochure

Regards
Jerry
jcahillBEF@aol.com

-------------------------
"Exercise For Life"

 

[jerry]

Hi everyone,

I am working on a brochure for the Boomer Esiason Foundation to bring awareness to the importance of fundraising EARLY for double lung transplants. With the new allocation system most people with CF are not informed soon enough and therefore do not have enough time to do fundraising to help with a lot of the costs.

Let me know your thoughts and when - in your opinion do you think you should start the process for fundraising...
I personally believe that this process should start before you are even listed as your condition with CF starts to progress and maybe your CF Center/doctor should approach the subject...

I would love to here your thoughts & suggestions for the brochure

Regards
Jerry
jcahillBEF@aol.com

-------------------------
"Exercise For Life"

 

[jerry]

Hi everyone,

I am working on a brochure for the Boomer Esiason Foundation to bring awareness to the importance of fundraising EARLY for double lung transplants. With the new allocation system most people with CF are not informed soon enough and therefore do not have enough time to do fundraising to help with a lot of the costs.

Let me know your thoughts and when - in your opinion do you think you should start the process for fundraising...
I personally believe that this process should start before you are even listed as your condition with CF starts to progress and maybe your CF Center/doctor should approach the subject...

I would love to here your thoughts & suggestions for the brochure

Regards
Jerry
jcahillBEF@aol.com

-------------------------
"Exercise For Life"

 

[jerry]

Hi everyone,
<br />
<br />I am working on a brochure for the Boomer Esiason Foundation to bring awareness to the importance of fundraising EARLY for double lung transplants. With the new allocation system most people with CF are not informed soon enough and therefore do not have enough time to do fundraising to help with a lot of the costs.
<br />
<br />Let me know your thoughts and when - in your opinion do you think you should start the process for fundraising...
<br />I personally believe that this process should start before you are even listed as your condition with CF starts to progress and maybe your CF Center/doctor should approach the subject...
<br />
<br />I would love to here your thoughts & suggestions for the brochure
<br />
<br />Regards
<br />Jerry
<br />jcahillBEF@aol.com
<br />
<br />-------------------------
<br />"Exercise For Life"

 

[vmhoward]

Jerry,

Being a parent of a CF'er. And Garran is very young (7), yet even at his young age he is already haveing to deal with the transplant issue.

Many parents of CFR'ers think, "I dont need to think about that now, I have time" I thought the same thing, until last year when Garran went into respiratory failure, and well we didnt have time.

We were faced with the "To Tx or not to Tx" decision, And at that point fundraising was not a decision we had made yet. So nothing had been saved in provision for that moment. We were caught unawares so to speak.

Given this situaion. I think that many parents of CF'ers should begin to plan for their child's future early. Even if they think that this is planning for an inevidable doom. Which some think that it is. I dont think that way. It is kind of like auto insurance. You buy it just in case.

You may not ever need it, but it is there in the unfortunate event that you need to have that transplant later in life. And your child will appreciate the fact that you were thinking about their future.

Now For some they are already out of their parents home and living on their own, it is not too late to begin fundraising. Even if they are in good health. There are organizations that will help and if you never use the funds they will evenually go to someone who can use them. And it will always go to a good cause.

Even before my son started down this Transplant path I began to think about starting a trust fund for his Medical future. Knowing how diffidult it might be for him to get certain prescriptions etc. I wanted to be sure that he was taken care of.

Anyway, that is my two cents. For what they are worth.

 

[vmhoward]

Jerry,

Being a parent of a CF'er. And Garran is very young (7), yet even at his young age he is already haveing to deal with the transplant issue.

Many parents of CFR'ers think, "I dont need to think about that now, I have time" I thought the same thing, until last year when Garran went into respiratory failure, and well we didnt have time.

We were faced with the "To Tx or not to Tx" decision, And at that point fundraising was not a decision we had made yet. So nothing had been saved in provision for that moment. We were caught unawares so to speak.

Given this situaion. I think that many parents of CF'ers should begin to plan for their child's future early. Even if they think that this is planning for an inevidable doom. Which some think that it is. I dont think that way. It is kind of like auto insurance. You buy it just in case.

You may not ever need it, but it is there in the unfortunate event that you need to have that transplant later in life. And your child will appreciate the fact that you were thinking about their future.

Now For some they are already out of their parents home and living on their own, it is not too late to begin fundraising. Even if they are in good health. There are organizations that will help and if you never use the funds they will evenually go to someone who can use them. And it will always go to a good cause.

Even before my son started down this Transplant path I began to think about starting a trust fund for his Medical future. Knowing how diffidult it might be for him to get certain prescriptions etc. I wanted to be sure that he was taken care of.

Anyway, that is my two cents. For what they are worth.

 

[vmhoward]

Jerry,

Being a parent of a CF'er. And Garran is very young (7), yet even at his young age he is already haveing to deal with the transplant issue.

Many parents of CFR'ers think, "I dont need to think about that now, I have time" I thought the same thing, until last year when Garran went into respiratory failure, and well we didnt have time.

We were faced with the "To Tx or not to Tx" decision, And at that point fundraising was not a decision we had made yet. So nothing had been saved in provision for that moment. We were caught unawares so to speak.

Given this situaion. I think that many parents of CF'ers should begin to plan for their child's future early. Even if they think that this is planning for an inevidable doom. Which some think that it is. I dont think that way. It is kind of like auto insurance. You buy it just in case.

You may not ever need it, but it is there in the unfortunate event that you need to have that transplant later in life. And your child will appreciate the fact that you were thinking about their future.

Now For some they are already out of their parents home and living on their own, it is not too late to begin fundraising. Even if they are in good health. There are organizations that will help and if you never use the funds they will evenually go to someone who can use them. And it will always go to a good cause.

Even before my son started down this Transplant path I began to think about starting a trust fund for his Medical future. Knowing how diffidult it might be for him to get certain prescriptions etc. I wanted to be sure that he was taken care of.

Anyway, that is my two cents. For what they are worth.

 

[vmhoward]

Jerry,

Being a parent of a CF'er. And Garran is very young (7), yet even at his young age he is already haveing to deal with the transplant issue.

Many parents of CFR'ers think, "I dont need to think about that now, I have time" I thought the same thing, until last year when Garran went into respiratory failure, and well we didnt have time.

We were faced with the "To Tx or not to Tx" decision, And at that point fundraising was not a decision we had made yet. So nothing had been saved in provision for that moment. We were caught unawares so to speak.

Given this situaion. I think that many parents of CF'ers should begin to plan for their child's future early. Even if they think that this is planning for an inevidable doom. Which some think that it is. I dont think that way. It is kind of like auto insurance. You buy it just in case.

You may not ever need it, but it is there in the unfortunate event that you need to have that transplant later in life. And your child will appreciate the fact that you were thinking about their future.

Now For some they are already out of their parents home and living on their own, it is not too late to begin fundraising. Even if they are in good health. There are organizations that will help and if you never use the funds they will evenually go to someone who can use them. And it will always go to a good cause.

Even before my son started down this Transplant path I began to think about starting a trust fund for his Medical future. Knowing how diffidult it might be for him to get certain prescriptions etc. I wanted to be sure that he was taken care of.

Anyway, that is my two cents. For what they are worth.

 

[vmhoward]

Jerry,
<br />
<br />Being a parent of a CF'er. And Garran is very young (7), yet even at his young age he is already haveing to deal with the transplant issue.
<br />
<br />Many parents of CFR'ers think, "I dont need to think about that now, I have time" I thought the same thing, until last year when Garran went into respiratory failure, and well we didnt have time.
<br />
<br />We were faced with the "To Tx or not to Tx" decision, And at that point fundraising was not a decision we had made yet. So nothing had been saved in provision for that moment. We were caught unawares so to speak.
<br />
<br />Given this situaion. I think that many parents of CF'ers should begin to plan for their child's future early. Even if they think that this is planning for an inevidable doom. Which some think that it is. I dont think that way. It is kind of like auto insurance. You buy it just in case.
<br />
<br />You may not ever need it, but it is there in the unfortunate event that you need to have that transplant later in life. And your child will appreciate the fact that you were thinking about their future.
<br />
<br />Now For some they are already out of their parents home and living on their own, it is not too late to begin fundraising. Even if they are in good health. There are organizations that will help and if you never use the funds they will evenually go to someone who can use them. And it will always go to a good cause.
<br />
<br />Even before my son started down this Transplant path I began to think about starting a trust fund for his Medical future. Knowing how diffidult it might be for him to get certain prescriptions etc. I wanted to be sure that he was taken care of.
<br />
<br />Anyway, that is my two cents. For what they are worth.

 

[jerry]

Thanks Victoria!
I agree 200% and that is why I am doing this brochure. We ALL need to be pro-active and prepare and should not put "blinders" on. Transplant is a part of CF and if we start early (as an insurance policy) we will hopefully not deal with the financial hardships. I myself am listed and started a transplant fund with NTAF (national transplant assistance fund)

Thanks for your feedback

jerry

 

[jerry]

Thanks Victoria!
I agree 200% and that is why I am doing this brochure. We ALL need to be pro-active and prepare and should not put "blinders" on. Transplant is a part of CF and if we start early (as an insurance policy) we will hopefully not deal with the financial hardships. I myself am listed and started a transplant fund with NTAF (national transplant assistance fund)

Thanks for your feedback

jerry

 

[jerry]

Thanks Victoria!
I agree 200% and that is why I am doing this brochure. We ALL need to be pro-active and prepare and should not put "blinders" on. Transplant is a part of CF and if we start early (as an insurance policy) we will hopefully not deal with the financial hardships. I myself am listed and started a transplant fund with NTAF (national transplant assistance fund)

Thanks for your feedback

jerry

 

[jerry]

Thanks Victoria!
I agree 200% and that is why I am doing this brochure. We ALL need to be pro-active and prepare and should not put "blinders" on. Transplant is a part of CF and if we start early (as an insurance policy) we will hopefully not deal with the financial hardships. I myself am listed and started a transplant fund with NTAF (national transplant assistance fund)

Thanks for your feedback

jerry

 

[jerry]

Thanks Victoria!
<br />I agree 200% and that is why I am doing this brochure. We ALL need to be pro-active and prepare and should not put "blinders" on. Transplant is a part of CF and if we start early (as an insurance policy) we will hopefully not deal with the financial hardships. I myself am listed and started a transplant fund with NTAF (national transplant assistance fund)
<br />
<br />Thanks for your feedback
<br />
<br />jerry

 

[Ratatosk]

When Max was diagnosed shortly after he was born, we began setting money aside for future expenses, not necessarily for transplant, but that was a consideration for the future. Originally it was for his vest, as we had been told we'd be responsible for 20% of the cost. Ended up our portion was much less.

Just a little here and there -- we have flexible spending accounts thru work, so I drop the reimbursement checks from copays, pharmacy, child care into his account...

 

[Ratatosk]

When Max was diagnosed shortly after he was born, we began setting money aside for future expenses, not necessarily for transplant, but that was a consideration for the future. Originally it was for his vest, as we had been told we'd be responsible for 20% of the cost. Ended up our portion was much less.

Just a little here and there -- we have flexible spending accounts thru work, so I drop the reimbursement checks from copays, pharmacy, child care into his account...

 

[Ratatosk]

When Max was diagnosed shortly after he was born, we began setting money aside for future expenses, not necessarily for transplant, but that was a consideration for the future. Originally it was for his vest, as we had been told we'd be responsible for 20% of the cost. Ended up our portion was much less.

Just a little here and there -- we have flexible spending accounts thru work, so I drop the reimbursement checks from copays, pharmacy, child care into his account...

 

[Ratatosk]

When Max was diagnosed shortly after he was born, we began setting money aside for future expenses, not necessarily for transplant, but that was a consideration for the future. Originally it was for his vest, as we had been told we'd be responsible for 20% of the cost. Ended up our portion was much less.

Just a little here and there -- we have flexible spending accounts thru work, so I drop the reimbursement checks from copays, pharmacy, child care into his account...

 

[Ratatosk]

When Max was diagnosed shortly after he was born, we began setting money aside for future expenses, not necessarily for transplant, but that was a consideration for the future. Originally it was for his vest, as we had been told we'd be responsible for 20% of the cost. Ended up our portion was much less.
<br />
<br />Just a little here and there -- we have flexible spending accounts thru work, so I drop the reimbursement checks from copays, pharmacy, child care into his account...