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This brave young man, from the UK, is amazing and real. He's a CF patient and a body builder named Jonny Simpson. He has overcome so much in life, not just from CF but life itself. Given his message, there is nothing better than keeping it real, from one CF patient to another. He is truly...

This is a great post from Debbie McConnell. Let her know your thoughts. https://www.facebook.com/debbiemcconnell007?fref=nf "May is cystic fibrosis awareness month. I have been asked “where are all the posts you usually fill our news feeds with?”. The truth is that cystic fibrosis is not a bed...

SSA SSDI requirments annoucement update and Disability - CF LEGAL For those of you who don't know, SSA had proposed changes in respiratory requirements back around 2012 that might make them more stringent. But at the 11th hour, CFF found out through CF Legal, got involved and offered testimony...

This is an example of what happens when volunteers and families take the initiative. So I have to brag! CF Volunteer and Advocate, Debbie McConnell and CF family, Peggy Davis of the Clarksville, TN chapter, met with Tennessee State Senator Mike Green and a bill was crafted to allow CF students...

This just in... http://www.cff.org/research/ClinicalResearch/PatientRegistryReport/ Please take this survey and let CFF know what you think. For those seeking to message CFF on disability, SSA and SSDI issues, this is a good opportunity...

It's outrageous that CF patients can't immediately qualify for SSDI when others get it for nothing less than a hangnail. Then there's talk of a 2-year "Community College Initiative" that would cost $85 billion to taxpayers. Yet CF patients have to beg. Some of us don't meet those super critical...

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...

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...

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

On August 19, 2005, Randy Snider lost his battle with Cystic Fibrosis at the young age of 15. He was a brave soul. He battled everyday just to live and through the pain, he made us all smile. He gave us all a purpose. We love and miss him very much. A website was created in his memory to...

On August 19, 2005, Randy Snider lost his battle with Cystic Fibrosis at the young age of 15. He was a brave soul. He battled everyday just to live and through the pain, he made us all smile. He gave us all a purpose. We love and miss him very much. A website was created in his memory to...

By the way, the new CFpulmonologist at Emory is awesome. Great guy. Dr. Seth Walker. So is the rest of the crew! Dr. Tangpricha rocks the house. Jessica, Shaina, Mews and Renee are the best! http://www.emoryhealthcare.org/cystic-fibrosis/our-group.html Randford (49, DF-508, P140S, Osteo)

So it's that time. I'm officially starting on hypertonic saline for the first time.It seems pretty simple. Does anyone have any advice or experiences to share? Are there any cautions? Thanks! Randford (49, DF-508, P140S, Osteo)

Folks, For those of you who have CF-related osteo, many are on bisphosphonates like Fosamax, Boniva, Actonel, Atelvia, Reclast or Forteo. I'm not recommending that you replace what your doctor has prescribed. Keep taking what you're doctor recommends.If nothing is working, the alternative is...

I'm on BCBSGa and the premiums are killing me. But now what? Will Georgia opt out without penalty from the feds? It appears at this moment that they can. Georgia wants to create a regional pool of all southeastern states, outside of Obamacare. Then there are health insurance exchanges through...

I've been trying since 2006 to restore bone density and nothing worked. I mean nothing. I was afraid to use bisphosphonates like Fosamax, Boniva, Actonel, Atelvia and Reclast since there have been questionable side effects. Most popular calcium supplements just did not work and I became...

Hello CF Community, It's been a long time. I decided that the best way that I could give back to www.CysticFibrosis.com, Reaching Out and The Cystic Fibrosis Foundation would be to create something that would raise awareness to all organizations. I'm 49 with Cystic Fibrosis and my nephew, Randy...

I'm really confused about something. I hope someone can help. <br><br> It was discovered that I have a severe case of osteoporosis, specifically in the lower spine and hips. I don't have any posture of fracture issues...yet. But here is my delima. I was told by my CF endocrinologist that I...