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The label "disabled" is a very good point and certainly not meant as a pejorative. Semantics, perhaps with respect to the government. It could be successfully argued that given a public environment of exposure, CF patients can get sick and the cause and effect can lead to debilitation. No doubt...

Should CF Patients and CF Families push for a lobby and petition for the declaration of disability for all CF patients? Given that 50% of all CF patients are 18 and older, coupled with the challenges of affordability, insurability and even employability, it's worth serious consideration. We can...

Believing, you are absolutely right. I think we should ultimately push for the declaration of disability for all CF patients. Given the challenges of affordability, insurability and even employability, it just makes plane since. We can make a difference with a collective voice to the foundation...

Keep in mind that 50% of all CF patients are ABOVE the age of 18. That’s a good thing but it has created new problems that many of us face. Based on the earlier post, “The Other Half of the Battle”…specifically, Insurability, Affordability, Employability, many patients who are 18 and older...

Hence why we should all lobby for the declaration that Cystic Fibrosis is in fact a disability in every since of the word. That opens the door for many patients to receive much needed assistance.

That's a very interesting thing to do. I might like to investigate this. Thanks "pjeliza".

Static, yes... we need a strong social network facilitating all of the needs of the CF community (education,employment, disability). We need to determine where CFF is on all this and how we can gather all CFF adults in this community to address this issues. CFF has the power and infrastructure...

We really need to find someway to create jobs postings, specifically for CF patients. This forum would be perfect for that. We have so many people in our networks. Surely there has to be a way to garner that power and offer opportunities from companies that might participate as "CF friendly"...

"believingjesus", as well intended as the "work-from-home" idea might be, it still doesn't address overall affordability. Given the average cost of Kalydeco for your son, no modest job with insurance would cover $300,000/year, hence why my idea is fundamentally flawed. So you're correct...

We have a long way to go "kyeev". Hopefully, we'll get there.

This is why we need to rally the CFF. They have the power, money and connects to make this happen. Somehow, all CF patients and families need to rally to make this happen. If we don't make these changes, people will suffer. Your son, nor any other CF patient should suffer due to archaic laws. I...

"Static"...In reference to CF patients being "social pariahs", I completely understand the rigors of managing the disease day to day. I live it as you do. With all due respect I meant it within the context of how we are perceived by employers and employees. And you are correct. Employers look...

I'm just concerned that his employer may see a spike in employee premiums, due to his treatment and he might be discovered. Let's hope not.

Believing... It was on page 28 and just shows the number of people per state. Honestly, I'm not sure how to proceed. I just pitched it to ideas@cff.org. It seems so simple but I'm sure there are caveats. I'll look into it further. For the moment, I'm just speaking off the cuff, with respect to...

And by the way, I think that perhaps one solution would be to devise a work from home program for all CF patients who need opportunities. Consider the number of CF patients per state (see source below). Given any state, there could be multiple companies, who contribute to the cure of Cystic...

It breaks my heart to read your reply. I feel your concern. Know that I'm not so smart. I just live it and worry about it, just as other aging CF patients have and will as treatments allow us to live longer. I'm frustrated that either no one is listening, CFF included or perhaps what I'm saying...

The ultimate battle is surviving CF. No doubt. Then there is other half of the battle. Insurability, Affordability, Employability, something Cystic Fibrosis adults worry about every single day. Yes, we’re living longer but that’s only half the battle. There are amazing treatments like Kalydeco...

Please help Dalton Dingus achieve his goal. He is a 9-year-old boy from rural Kentucky with a singular Christmas wish -- to receive a record-breaking number of Christmas cards before he succumbs to CF. Help him beat the guinness book of world records...

For all TOBI users, this looks promising. http://www.reuters.com/article/2012/09/05/us-fda-novartis-cystic-idUSBRE8841F220120905

I'm so sorry to hear of your loss. She was your angel. She fought a long battle. I agree with you. Why some survive and some don't is a mystery to me as well. No child should ever go before their parent. But I just don't understand why God allows this. Please don't be upest with me, I mean know...