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

[Cherylwithone]

Julie, Heather is right. They do have a relationship with Beth Suffian and they pay for to speak at hospitals.
<br />
<br />I heard her speak along with Joan Finnegan Brooks. Some of the info was off the mark. Like you can never meet someone with CF if you yourself has cf. My daughter has meet several people with cf and it was the best thing that ever happened. It gave her the fight to make plans etc.
<br />
<br />You would think that the CFF would want the extra legal help for people. After all there is alot who need help. An you right we are all in the same fight.
<br />
<br />Keep doing what your doing Julie. We would be lost with out here.

 

[JennifersHope]

I think that it is not acceptable for you not to be able to hand out information about your organization as long as you were not seeking financial support. There are many aspects to health care when it comes to CF. Obviously they need money to do research and that is the primary focus of the CFF. I believe there are other organizations that help resource CFers who can not pay for their medications. I have personally been assisted by the TObi Foundation as well as the Pulmozyme access solutions.

As far as Beth goes, she is an amazing person. She should be paid for her professional skills, she is a lawyer for Pete's sake. It is to our advantage, or I should say to yours that she has CF and can understand things so well.

I do not feel like it is fair to compare Julie and Beth. Julie has an amazing heart of gold, and she is very knowledgeable about a lot of things. I am grateful that she is willing to help people get approved for SSDI etc. However, it is not right to compare Beth to her.

Beth is an amazing person and I find it hard to believe that "she missed the mark about anything"

Good Luck Julie, don't quit, a lot of people benefit from you and you are making a difference.

 

[JennifersHope]

I think that it is not acceptable for you not to be able to hand out information about your organization as long as you were not seeking financial support. There are many aspects to health care when it comes to CF. Obviously they need money to do research and that is the primary focus of the CFF. I believe there are other organizations that help resource CFers who can not pay for their medications. I have personally been assisted by the TObi Foundation as well as the Pulmozyme access solutions.

As far as Beth goes, she is an amazing person. She should be paid for her professional skills, she is a lawyer for Pete's sake. It is to our advantage, or I should say to yours that she has CF and can understand things so well.

I do not feel like it is fair to compare Julie and Beth. Julie has an amazing heart of gold, and she is very knowledgeable about a lot of things. I am grateful that she is willing to help people get approved for SSDI etc. However, it is not right to compare Beth to her.

Beth is an amazing person and I find it hard to believe that "she missed the mark about anything"

Good Luck Julie, don't quit, a lot of people benefit from you and you are making a difference.

 

[JennifersHope]

I think that it is not acceptable for you not to be able to hand out information about your organization as long as you were not seeking financial support. There are many aspects to health care when it comes to CF. Obviously they need money to do research and that is the primary focus of the CFF. I believe there are other organizations that help resource CFers who can not pay for their medications. I have personally been assisted by the TObi Foundation as well as the Pulmozyme access solutions.
<br />
<br />As far as Beth goes, she is an amazing person. She should be paid for her professional skills, she is a lawyer for Pete's sake. It is to our advantage, or I should say to yours that she has CF and can understand things so well.
<br />
<br />I do not feel like it is fair to compare Julie and Beth. Julie has an amazing heart of gold, and she is very knowledgeable about a lot of things. I am grateful that she is willing to help people get approved for SSDI etc. However, it is not right to compare Beth to her.
<br />
<br />Beth is an amazing person and I find it hard to believe that "she missed the mark about anything"
<br />
<br />Good Luck Julie, don't quit, a lot of people benefit from you and you are making a difference.

 

[musclemania70]

Unfortunately, I think they are doing the right thing legally. If they put up a 'table' then they are endorsing/supporting whatever it is that you are doing. Even though you may be completely legit and skilled, they can't afford to associate with an organization who doesn't have the reputation or financial backing that they do.

They have to do it to protect themselves from idiots who will file lawsuits. No matter how valuable your organization may be, they may not be able to 'legally' support your organization.

I am guessing its not because what you are doing is bad, its because they have to be careful who they endorse. For-profit agencies probably have no advice to give to CFers so they are ok with their presence.

All I'm saying is that it means what you are doing isn't bad, its just not something that they can legally endorse for all those stupid legal reasons....

Unless you are paying an attorney to represent you, giving advice about the US gov't and their procedures/rules is serious business. Beth wouldn't even provide advice to me unless she was 'legally representing me' and this was for a simple question.

 

[musclemania70]

Unfortunately, I think they are doing the right thing legally. If they put up a 'table' then they are endorsing/supporting whatever it is that you are doing. Even though you may be completely legit and skilled, they can't afford to associate with an organization who doesn't have the reputation or financial backing that they do.

They have to do it to protect themselves from idiots who will file lawsuits. No matter how valuable your organization may be, they may not be able to 'legally' support your organization.

I am guessing its not because what you are doing is bad, its because they have to be careful who they endorse. For-profit agencies probably have no advice to give to CFers so they are ok with their presence.

All I'm saying is that it means what you are doing isn't bad, its just not something that they can legally endorse for all those stupid legal reasons....

Unless you are paying an attorney to represent you, giving advice about the US gov't and their procedures/rules is serious business. Beth wouldn't even provide advice to me unless she was 'legally representing me' and this was for a simple question.

 

[musclemania70]

Unfortunately, I think they are doing the right thing legally. If they put up a 'table' then they are endorsing/supporting whatever it is that you are doing. Even though you may be completely legit and skilled, they can't afford to associate with an organization who doesn't have the reputation or financial backing that they do.
<br />
<br />They have to do it to protect themselves from idiots who will file lawsuits. No matter how valuable your organization may be, they may not be able to 'legally' support your organization.
<br />
<br />I am guessing its not because what you are doing is bad, its because they have to be careful who they endorse. For-profit agencies probably have no advice to give to CFers so they are ok with their presence.
<br />
<br />All I'm saying is that it means what you are doing isn't bad, its just not something that they can legally endorse for all those stupid legal reasons....
<br />
<br />Unless you are paying an attorney to represent you, giving advice about the US gov't and their procedures/rules is serious business. Beth wouldn't even provide advice to me unless she was 'legally representing me' and this was for a simple question.

 

[julie]

Musclemania, just an FYI, I do maintain a VERY large insurance policy on DAFCF in the event that someone does decide to sue me. Furthermore, if the CFF were to allow me to hand out info at "their" event, it would in no way make them liable for any information I were to give someone.

That being said, statistics show that lawsuits against nonprofits are not only less frequent than those against for profit corporations, but they are also less likely to "stand up" in court unless there is proof of blantant dishonesty/disregard for the law.

and I have to respectfully disagree here with the Beth/Julie comment... just my opinion but just because someone has a law degree doesn't mean dittly squat. Beth is a great wonderful woman, ABSOLUTELY! she is also a FANTASTIC lawyer. But I've experienced a handful of crappy lawyers in my day, and I started giving advice back in 2005 (DAFCF was founded in 2008) because of the crappy experience Mark and I had with our own SSA lawyer and the back pay he got for doing virtually nothing. Just wanted to put that out there.

Regardless, I think it's BS that I'm not allowed to hand out info at the walk. I think maybe I'll go and wear a shirt that says something about DAFCF... I think people deserve to know the organization is out there, and I WILL be meeting with UW and childrens social workers in the CF clinic, but there is such a great opportunity to meet so many people at the walk. I just don't want to pass up that opportunity.

Anybody got any teeshirt ideas??? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

Musclemania, just an FYI, I do maintain a VERY large insurance policy on DAFCF in the event that someone does decide to sue me. Furthermore, if the CFF were to allow me to hand out info at "their" event, it would in no way make them liable for any information I were to give someone.

That being said, statistics show that lawsuits against nonprofits are not only less frequent than those against for profit corporations, but they are also less likely to "stand up" in court unless there is proof of blantant dishonesty/disregard for the law.

and I have to respectfully disagree here with the Beth/Julie comment... just my opinion but just because someone has a law degree doesn't mean dittly squat. Beth is a great wonderful woman, ABSOLUTELY! she is also a FANTASTIC lawyer. But I've experienced a handful of crappy lawyers in my day, and I started giving advice back in 2005 (DAFCF was founded in 2008) because of the crappy experience Mark and I had with our own SSA lawyer and the back pay he got for doing virtually nothing. Just wanted to put that out there.

Regardless, I think it's BS that I'm not allowed to hand out info at the walk. I think maybe I'll go and wear a shirt that says something about DAFCF... I think people deserve to know the organization is out there, and I WILL be meeting with UW and childrens social workers in the CF clinic, but there is such a great opportunity to meet so many people at the walk. I just don't want to pass up that opportunity.

Anybody got any teeshirt ideas??? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

Musclemania, just an FYI, I do maintain a VERY large insurance policy on DAFCF in the event that someone does decide to sue me. Furthermore, if the CFF were to allow me to hand out info at "their" event, it would in no way make them liable for any information I were to give someone.
<br />
<br />That being said, statistics show that lawsuits against nonprofits are not only less frequent than those against for profit corporations, but they are also less likely to "stand up" in court unless there is proof of blantant dishonesty/disregard for the law.
<br />
<br />and I have to respectfully disagree here with the Beth/Julie comment... just my opinion but just because someone has a law degree doesn't mean dittly squat. Beth is a great wonderful woman, ABSOLUTELY! she is also a FANTASTIC lawyer. But I've experienced a handful of crappy lawyers in my day, and I started giving advice back in 2005 (DAFCF was founded in 2008) because of the crappy experience Mark and I had with our own SSA lawyer and the back pay he got for doing virtually nothing. Just wanted to put that out there.
<br />
<br />Regardless, I think it's BS that I'm not allowed to hand out info at the walk. I think maybe I'll go and wear a shirt that says something about DAFCF... I think people deserve to know the organization is out there, and I WILL be meeting with UW and childrens social workers in the CF clinic, but there is such a great opportunity to meet so many people at the walk. I just don't want to pass up that opportunity.
<br />
<br />Anybody got any teeshirt ideas??? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jeana]

Julie,
I think it's great what you are doing and love your T-shirt idea. Although I am disappointed that CFF won't allow you to set up a table, I would hate to see anyone down on the CFF just because of one policy. They are doing so much to push new drugs for people with CF. Anyway, Julie, I hope that your T-shirt proves successful. And I wish the CFF the best of fundraising to help CFers.

 

[Jeana]

Julie,
I think it's great what you are doing and love your T-shirt idea. Although I am disappointed that CFF won't allow you to set up a table, I would hate to see anyone down on the CFF just because of one policy. They are doing so much to push new drugs for people with CF. Anyway, Julie, I hope that your T-shirt proves successful. And I wish the CFF the best of fundraising to help CFers.

 

[Jeana]

Julie,
<br />I think it's great what you are doing and love your T-shirt idea. Although I am disappointed that CFF won't allow you to set up a table, I would hate to see anyone down on the CFF just because of one policy. They are doing so much to push new drugs for people with CF. Anyway, Julie, I hope that your T-shirt proves successful. And I wish the CFF the best of fundraising to help CFers.

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[petnurse]

Julie I hate that you are dealing with this. What i hate even more is to hear the issues people have with the CFF. We have (luckily ) a great chapter here. Granted I volunteer tirelessly, but they are like family. All the new drugs we have, we can thank them for funding. And for the person complaining that they don't have help, they CFF DOES offer financial support with medications. In fact it's one of the only foundation's that does. If you need help, call them. Julie I'm wondering what response you may get if you call headquarters. Good luck to you!

 

[JennifersHope]

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