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

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JennifersHope

New member
Julie, I am sorry you are going through this. I appreciate all that you are doing. I do have to disagree with you about the lawyer thing. A lawyer goes through a heck of a lot of training to learn the laws, does that make them a good lawyer, not necessarily. However it gives them the legal ground to practice law.

Beth and you can not be compared as knowing the same thing or being on the same level. That is not accurate. She is well versed in CF, as well as disability laws. If you remember, some of the information you were giving out, was not updated, your private messaged me but never corrected it publicly.

You will see, once you become an RN, you will find some nurses are not as knowledgeable as others but I think you will find it insulting if someone tries to tell you things that you studied and mastered in school and then once you start your professional career.

I think there is a place for both your service as well as Beth's but you are not on the same level as her. She has studied law and is able to advocate for a CFer way more effectively IMO.

With that being said Julie, your heart is gold and many people appreciate you. Believe me with the amount of flow through this forum, you will get to help many, many, people.

Thank you for all you do
 
J

JennifersHope

New member
Julie, I am sorry you are going through this. I appreciate all that you are doing. I do have to disagree with you about the lawyer thing. A lawyer goes through a heck of a lot of training to learn the laws, does that make them a good lawyer, not necessarily. However it gives them the legal ground to practice law.
<br />
<br />Beth and you can not be compared as knowing the same thing or being on the same level. That is not accurate. She is well versed in CF, as well as disability laws. If you remember, some of the information you were giving out, was not updated, your private messaged me but never corrected it publicly.
<br />
<br />You will see, once you become an RN, you will find some nurses are not as knowledgeable as others but I think you will find it insulting if someone tries to tell you things that you studied and mastered in school and then once you start your professional career.
<br />
<br />I think there is a place for both your service as well as Beth's but you are not on the same level as her. She has studied law and is able to advocate for a CFer way more effectively IMO.
<br />
<br />With that being said Julie, your heart is gold and many people appreciate you. Believe me with the amount of flow through this forum, you will get to help many, many, people.
<br />
<br />Thank you for all you do
 
E

ElizabethlovesChris

New member
Julie,
I'm not going to get into the Beth v. Julie debate... it was SO not the original intent of your thread! I think you do amazing work for the CF community and I would be ridiculously frustrated too if I were turned away like you were. We ARE all in the same fight together and I find it a negative side effect of 'red tape' that your services are not being allowed a table, literally, at the walk. However, I do think you can still be an effective advertisement of DAFCF through a t-shirt AND a handmade poster sign (like held higher on a wooden post, picture a union rally...)on one side write "Walking for CF" or "Cure CF" or whatever and then on the other side write your DAFCF website and then at least people will see your sign on the walk! Just hang around the check-in table with your sign and your triple stroller. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Liz
 
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ElizabethlovesChris

New member
Julie,
I'm not going to get into the Beth v. Julie debate... it was SO not the original intent of your thread! I think you do amazing work for the CF community and I would be ridiculously frustrated too if I were turned away like you were. We ARE all in the same fight together and I find it a negative side effect of 'red tape' that your services are not being allowed a table, literally, at the walk. However, I do think you can still be an effective advertisement of DAFCF through a t-shirt AND a handmade poster sign (like held higher on a wooden post, picture a union rally...)on one side write "Walking for CF" or "Cure CF" or whatever and then on the other side write your DAFCF website and then at least people will see your sign on the walk! Just hang around the check-in table with your sign and your triple stroller. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Liz
 
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ElizabethlovesChris

New member
Julie,
<br />I'm not going to get into the Beth v. Julie debate... it was SO not the original intent of your thread! I think you do amazing work for the CF community and I would be ridiculously frustrated too if I were turned away like you were. We ARE all in the same fight together and I find it a negative side effect of 'red tape' that your services are not being allowed a table, literally, at the walk. However, I do think you can still be an effective advertisement of DAFCF through a t-shirt AND a handmade poster sign (like held higher on a wooden post, picture a union rally...)on one side write "Walking for CF" or "Cure CF" or whatever and then on the other side write your DAFCF website and then at least people will see your sign on the walk! Just hang around the check-in table with your sign and your triple stroller. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Liz
 
C

Cherylwithone

Guest
I need to response to Jennifershope. I did not say Beth gave out the wrong info herself. Some of the stuff that was said was off the mark, not quite the correct info and could scare alot of young moms who just found out their child has CF. Legal info itself was good information.

If you go around saying you can never have contact with another person with CF. Then what about the yound moms who have two kids with CF. I myself feel it is important not to isolate people like that. They need to know they are not alone fighting this. Common sense rules first.

And during this entire talk by these two woman they kept saying that D508 is the most severe. It is the MOST common.
I know people with d508 and they are very healthy compare to others with the same mutation who are not doing as well.

That is what I got out of the talk. No disrespect to Beth. As I know she has helped many people and will continue to do so.

I also think Julie has helped many people and since we are all fiighting for the same thing...the more people and the more info, the better.
 
C

Cherylwithone

Guest
I need to response to Jennifershope. I did not say Beth gave out the wrong info herself. Some of the stuff that was said was off the mark, not quite the correct info and could scare alot of young moms who just found out their child has CF. Legal info itself was good information.

If you go around saying you can never have contact with another person with CF. Then what about the yound moms who have two kids with CF. I myself feel it is important not to isolate people like that. They need to know they are not alone fighting this. Common sense rules first.

And during this entire talk by these two woman they kept saying that D508 is the most severe. It is the MOST common.
I know people with d508 and they are very healthy compare to others with the same mutation who are not doing as well.

That is what I got out of the talk. No disrespect to Beth. As I know she has helped many people and will continue to do so.

I also think Julie has helped many people and since we are all fiighting for the same thing...the more people and the more info, the better.
 
C

Cherylwithone

Guest
I need to response to Jennifershope. I did not say Beth gave out the wrong info herself. Some of the stuff that was said was off the mark, not quite the correct info and could scare alot of young moms who just found out their child has CF. Legal info itself was good information.
<br />
<br />If you go around saying you can never have contact with another person with CF. Then what about the yound moms who have two kids with CF. I myself feel it is important not to isolate people like that. They need to know they are not alone fighting this. Common sense rules first.
<br />
<br />And during this entire talk by these two woman they kept saying that D508 is the most severe. It is the MOST common.
<br />I know people with d508 and they are very healthy compare to others with the same mutation who are not doing as well.
<br />
<br />That is what I got out of the talk. No disrespect to Beth. As I know she has helped many people and will continue to do so.
<br />
<br />I also think Julie has helped many people and since we are all fiighting for the same thing...the more people and the more info, the better.
 
C

chrissyd

New member
Julie I can totally understand how frustraited you are! Several years ago I was having an event to raise money for CF, and while the CFF supported it it could not be advertised at the walk. (But we could tell people about it)
I was so frustraited because the money all goes to the same place...anyway I know the situations are not the same but I do understand your frustration with them.
(It was also very difficult for me in the begining fundraising with them because I felt as if they did not talk about adults with CF, but hopefully that is changing now.)

<img src="i/expressions/rose.gif" border="0">
 
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chrissyd

New member
Julie I can totally understand how frustraited you are! Several years ago I was having an event to raise money for CF, and while the CFF supported it it could not be advertised at the walk. (But we could tell people about it)
I was so frustraited because the money all goes to the same place...anyway I know the situations are not the same but I do understand your frustration with them.
(It was also very difficult for me in the begining fundraising with them because I felt as if they did not talk about adults with CF, but hopefully that is changing now.)

<img src="i/expressions/rose.gif" border="0">
 
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chrissyd

New member
Julie I can totally understand how frustraited you are! Several years ago I was having an event to raise money for CF, and while the CFF supported it it could not be advertised at the walk. (But we could tell people about it)
<br />I was so frustraited because the money all goes to the same place...anyway I know the situations are not the same but I do understand your frustration with them.
<br />(It was also very difficult for me in the begining fundraising with them because I felt as if they did not talk about adults with CF, but hopefully that is changing now.)
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
A

adillsworth

New member
Maybe you could get a couple of friends and family to wear your tee-shirts and hand out your flyers. They could walk through the crowd giving them out and getting your message out there to those who need it. I don't see what harm that would do if they won't let you set up a table.
 
A

adillsworth

New member
Maybe you could get a couple of friends and family to wear your tee-shirts and hand out your flyers. They could walk through the crowd giving them out and getting your message out there to those who need it. I don't see what harm that would do if they won't let you set up a table.
 
A

adillsworth

New member
Maybe you could get a couple of friends and family to wear your tee-shirts and hand out your flyers. They could walk through the crowd giving them out and getting your message out there to those who need it. I don't see what harm that would do if they won't let you set up a table.
 
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entropy

Guest
Havoc and I had the same problem when attempting to get the CFFs support for our music project. It's a NPO, but there are a couple guys at the top who live very well off all the donations, and they do not want the security of their luxurious livelihoods threatened in any way. Bottom line.
 
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entropy

Guest
Havoc and I had the same problem when attempting to get the CFFs support for our music project. It's a NPO, but there are a couple guys at the top who live very well off all the donations, and they do not want the security of their luxurious livelihoods threatened in any way. Bottom line.
 
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entropy

Guest
Havoc and I had the same problem when attempting to get the CFFs support for our music project. It's a NPO, but there are a couple guys at the top who live very well off all the donations, and they do not want the security of their luxurious livelihoods threatened in any way. Bottom line.
 
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minimedic304

New member
The CFF is a business, and when it comes down to it , they care about making a profit for their salaries. The CFF has changed from what it was many years ago. This is why I started my foundation because I could no longer stand to see there CEO make $560k a year while there are CF patients that can not pay for food. It's even hard to get support on this site. I have asked to get my 501c3 listed on this site for the last 6 months, and have gotten no response, and half the listing under the donation section are no longer active foundations. Yet my foundation runs all by volunteers and is actually using almost every cent to improve lives of CF patients. I have no desire for personal gain through this foundation, I just want to help because I fully know what everyone is going through. If we were given more support we could help patients nationally. so please feel free to email the administrators on this site to help us get listed. www.breathe-easy.org
 
M

minimedic304

New member
The CFF is a business, and when it comes down to it , they care about making a profit for their salaries. The CFF has changed from what it was many years ago. This is why I started my foundation because I could no longer stand to see there CEO make $560k a year while there are CF patients that can not pay for food. It's even hard to get support on this site. I have asked to get my 501c3 listed on this site for the last 6 months, and have gotten no response, and half the listing under the donation section are no longer active foundations. Yet my foundation runs all by volunteers and is actually using almost every cent to improve lives of CF patients. I have no desire for personal gain through this foundation, I just want to help because I fully know what everyone is going through. If we were given more support we could help patients nationally. so please feel free to email the administrators on this site to help us get listed. www.breathe-easy.org
 
M

minimedic304

New member
The CFF is a business, and when it comes down to it , they care about making a profit for their salaries. The CFF has changed from what it was many years ago. This is why I started my foundation because I could no longer stand to see there CEO make $560k a year while there are CF patients that can not pay for food. It's even hard to get support on this site. I have asked to get my 501c3 listed on this site for the last 6 months, and have gotten no response, and half the listing under the donation section are no longer active foundations. Yet my foundation runs all by volunteers and is actually using almost every cent to improve lives of CF patients. I have no desire for personal gain through this foundation, I just want to help because I fully know what everyone is going through. If we were given more support we could help patients nationally. so please feel free to email the administrators on this site to help us get listed. www.breathe-easy.org
 
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