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Some notes from my first day...the keynote speaker was Bonner Paddock I will share some of my notes...he began by asking. "Who sets our limits?" He spoke of his cerebral palsy as being given a gift. He spent the first 30 years of his life being angry and embarrassed because he couldn't walk...

http://www.ivsolutions.com/2015/09/cystic-fibrosis-house-cleaning-tips/

Today is my first day at this conference on rare diseases. I bring your spirit and fight. I wonder what i will learn and who i will meet. Their stories will be amazing and i will share them with you. This journey today is about communication...who will throw their stories in the air? From...

Amber: I will be thinking of you as I look it over with Fabio! You will love all the new features and be trying it out I am sure! The conference is September 24th and 25th, then a Gala dinner...I'll be meeting Fabio and some members of the site...in between. Can't wait! Salt and Light, Jeanne

I will be there representing all of us! We are being sponsored by Healthcare at Home a company from the UK. I met Natalie Douglas in April at an eyeforpharma conference in Philadelphia. She is a Board member of www.globalgenes.org. She is impressed with our community, and the work we are...

only in New Hampshire! It is a beginning...for patient self management! http://www.xconomy.com/san-diego/2015/09/02/topol-calls-on-healthcare-industry-to-emancipate-patient-data/ I love Eric Topol...Hope I can meet him someday soon! Salt and Light, jeanne

Found It! or rather BelievinginJesus Found it! http://forum.cysticfibrosis.com/threads/80643-HELP-Major-drop-in-fev1 ProudPapa....I need this for a proposal I am working on that proves our community needs tools for home monitoring...especially spirometry...as you attested in our survey last...

The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago. Thanks for any one who can help me find the thread. Salt and Light, Jeanne

Thanks for all your inspiration to our community...1000 times and lots of OLD blogs from the child: BeautifulSoul too. OUr archives aren't all available. When you ask who had the most posts...that would be JazzysMom....15000! Right after that, she died! I hold her always in my heart. Salt and...

Thanks Amber for the reminder to have a grateful heart! I love your choices. Sr. Carol Perry did the homily this past weekend at my Marble Church NYC and she suggested the book: Lila by Marilynn Robinson...over 800 people on Amazon think it is a good choice. I don't read fiction much...so I'll...

OMG Autumn...this is such a strange story! Who would think this could happen...my natural instinct is to pray to St Anthony..patron of the lost...so I call on all saints living and past to bring this story to closure. I wonder...was she your friend? Salt and Light, Jeanne

How adorable! I love to read this! He is imitating and yet so creative...can't help but think he is an inventor...he'll be discovering new cures for the many thousands of under served diseases after CF of course! Salt and Light, Imogene

Sitting in my new office...I had to share the beautiful photos and note from BeautifulSoul... they fill my soul! The tree outside my window is my FIG TREE..and it is blossoming...shhh I don't want the deer to know....they have eaten all our tomatoes and flowers! Thank you Amber! Salt and light...

FYI: It may be interesting to know that Walgreens reads our site every day...at least one member of their CF team...he emails me when he doesn't get the daily news! So keep talking, keep asking for better service! They may be listening! Salt and Light, Jeanne

I am thankful for this beautiful community....supportive and knowledgeable! I love your new blog, Amber...you have such a designer way about you...and so loving! I think your hubby is very lucky to have you as his supporter in chief...probably has something to do with the bonus....You BOTH...

http://www.cysticfibrosisnews.com/ivacaftor-real-world-results-2/?utm_source=All&utm_campaign=CF-July+28%2C+2015&utm_medium=email

Dear all, Heads up that I feature (filmed on the London Eye discussing my battle with CF and daily mind-set to appreciating life) in a BBC Wales documentary ‘Before I kick the bucket’ as a young lady with cancer, Rowena Kincaid, looks into whether she will write her own 'bucket list'...

Darren Schuster His family asked us to remember Darren. They remembered him with a gift to CFTechnology.org and we are grateful for Darren's life and for the gift which will be used for our community and technology. Thank you, Jeanne Barnett

​http://www.healthdatamanagement.com/news/Physicians-Increasingly-Open-to-Video-Consultations-50841-1.html?utm_campaign=accountable_care_final-jul%207%202015&utm_medium=email&utm_source=newsletter&ET=healthdatamanagement%3Ae4706820%3A3656117a%3A&st=email

From Respondent 52...we have this question: Medical Record Keeping (How do you store your medical records?)