Search results

May the year bring peace, health and joy! This year we will be donating to the community from our inventory. Today I have a Trek S Portable Aerosol System. If you have posted at least one hundred messages hefd at cystic fibrosis.com and know you could use this equipment, just email...

My good friend, Dr. Adrienne Sprouse has some warnings for the holidays... As she says...it's good to just be aware: http://www.youtube.com/watch?v=8JqQx2tUI0k

Thank you for letting us host this beautiful community. Someone said it best: She had come to a great source for answers to her questions concerning her treatment routine. It is amazing how you receive each other (usually with grace), appreciate the responses, summarize the conclusions and...

cflawyer Junior Member Join Date Nov 2013 Posts If a person with CF needs information on accessing insurance coverage they can contact the CF Legal Information Hotline at 1-800-622-0385. All calls are free and confidential. The Hotline is sponsored by a grant from the CF Foundation and was...

http://sethgodin.typepad.com/seths_blog/2013/11/culture-and-selfishness.html for those of you trying to builds business (and more of you will be in this economy). Here is my "mentor"..

Happy Thanksgiving everyone! It is a beautiful holiday here in the U.S. just hoping the weather calms down across the country. Usually (as long as I can remember) Beleache has been our holiday well wisher. This year, she is recovering from an exacerbation. I texted with her and she is...

http://www.aotc4d.org/

changing healthcare? http://www.healthtechviews.com/2013/10/03/how-wearable-technologies-could-change-healthcare/#! I love the one for the woman with the artificial eye.... wearable spirometry? we have wearable vests... ?? others for CF??

http://www.sciencedaily.com/releases/2013/08/130825171520.htm This article has to be purchased. http://www.sciencedaily.com/releases/2013/08/130825171520.htm $32.00

Kevin Kelly made it a fad to measure all aspects of our aliveness. He calls it "the quantified self." Patients have always kept records using pencils and sheets of scrap paper, notebooks, file folders and cabinets, and computer files. Patients with a complicated disease like cystic fibrosis...

As a teacher, I know the best way to learn is to ASK Questions. The trouble with being in a doctor’s office, getting a serious diagnosis or learning about a comorbidity for the first time, as so often happens with cystic fibrosis, is a person can become flooded. The emotions may take over and...

Patients joining the conversations at a site like cysticfibrosis.com may come with hesitation. They wonder if they’ll hear things that are too scary. (There is a good chance their own health care providers told them that)! Patient communities aren’t for all patients and care givers…but for many...

With the latest scientific advances it’s becoming clear: personal genetics are becoming defined, accessible and affordable. One of the most popular conversations patients have at cysticfibrosis.com is about genetics…their personal mutations. Patients receive a mutation from their mother and...

This is a presentation Alice Rathjen gave in San Diego this week...to 12k people! Jeanne http://www.slideshare.net/dnatimes/dna-guide-genomemapping

http://www.youtube.com/watch?v=sMR8UPeGrgU

The human genome has been mapped for over 10 years. The cost started out at $100,000.00 dollars +…and now can be done for 5 or 6 thousand dollars and less but the prediction is that within the next months, the cost could fall to as low as $100.00. The cost of a whole mapping would fall in the...

Grossology Isn’t a word with an exact definition in Webster’s Dictionary. It doesn’t work for my Scrabble game… But it is a traveling exhibition coming to Liberty Science Center, here in New Jersey. I think our members could have designed the whole exhibition. We spend so much time learning...

In this installment of Your Environmental Minute, Dr. Adrienne Sprouse helps identify some of the symptoms that could be triggered simply by the use of your gas stove. http://www.youtube.com/watch?v=8fcAzgL9rBo for more information go to www.dradriennesprouse.com

http://mashable.com/2013/05/06/your-phone-is-dirtier-than-these-5-objects/

Thanks for your patience today as we switched to our new faster stronger servers! Great job Ennio... hopefully smooth sailing now!! salt and light, jeanne