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Hi Ray, Do you speak Chinese? Where in China are you traveling. I ask because my son is in Chengdu. There is a big ex pat community there. He runs the Bookworm Restaurant. http://www.chengdubookworm.com/ I'll ask Peter my husband to weigh in. We traveled there last September. I hope you...

Jane, I know there have been much talk about the different clinics in the past...I wonder if BeautifulSoul was transplanted in Cleveland...she is a good result! On a different note, I love the city of Cleveland. If you have to spend time there...it is of course on the Lake Erie and there is a...

AboveAllIsLove, This is a beautiful reply so understanding and helpful! Education is a BIG DEAL. We are failing our youth on so many levels...not just chronically ill children, but all young people need to feel engaged and love learning. I like this most popular Ted Talk...

Hannah, There is one person I am thinking of from our community who ran away at 13. He thought his life would be too short to waste going to school. He later got his GED and graduated with honors from a top college. Today, he is in his 50s and has an important job with the US government. It...

Simba: Not sure if you saw this from a few years ago: http://www.cysticfibrosis.com/knowcf/details.cfm?articleID=7 Maybe it will help. Salt and light, Imogene

Robbiekay. So sorry to hear of your loss..your love lives on. Thank you for sharing his beautiful life with us. You are in my prayers today as I ask God to surround you in light and peace. Imogene

What a wonderful celebration...we remember and are so happy for you....many blessings for your engagement and all the good news you bring to us! http://www.cysticfibrosis.com/blogs/index.cfm?forumid=45 You are Beautiful!

— researchers at the Hubrecht Institute in the Netherlands showed they could fix a mutation that causes cystic fibrosis. http://www.nytimes.com/2014/03/04/health/a-powerful-new-way-to-edit-dna.html?ref=health?src=dayp&_r=0

http://myemail.constantcontact.com/SOTW-Making-A-Difference.html?soid=1101822068091&aid=DRUGXXbZvpo#fblike

http://www.cysticfibrosis.com/blogs/index.cfm?month=1&year=2007 Hi Ben, we go back a long time. I'm sad for you with this post...but you wrote a similar one when another relationship broke up...I don't know what to say...you are a talented photographer and I know you love the outdoors. I am...

Beautifully done. I loved the message at the end..summed it all up. What a beautiful philosophy. I think the grave is the donor's ...right? thanks, salt and light , imogene

Thanks LittleLab! As usual, you gave perspective and lots for us to think about. I have been working on Medrise and as always, thinking of this community. I received this link from Chris Baldwin, PhD. He is working with us and with a new tech/medical center in Amsterdam (in your neck of the...

Bill: They are not questioning your age or veracity...they question whether you provide an unrealistic amount of hope, because you have lived so long with this disease, or that is the way I understand their comments. In fact, we have many members living beyond the expected, median age. It is...

It seems like this thread has already been "hijacked". So I'll offer a cartoon I made after watching the movie: "Dallas Buyer's Club". Ron Woodroof was an Aids patient in the 1980's and 90's. He couldn't get the help he wanted in the Health care system and he became his own supplier!

Dear Members of this thread, I always read all the posts and I have to admit, I receive the most complaints about Printer. When I started this site, back in 1996, my partner (who had CF) had not heard of anyone living very long...and then we heard of someone who was 70. This was a miracle! I...

Thanks for the suggestions...I passed them on! Wow Heather, I'm glad you are better. I think Dennis used up a lot of the home healthcare Medicare allotment here in NJ. He is just angry with the system.

Community: My high school friend Dennis's wife had a stroke almost 2 years ago. She had worthless care in a system that failed every step of the way. Dennis is frantic, asking all his friends for help.... Well I was sure, I could find a good on line support group (like ours) only for stroke...

Hi ProudPapa, It looks like you have received a lot of good ideas here. I have a question for you. How long was it between PFT testing that the drop was recorded? Did he lose the function in 3 months or longer? Just wondering. Thanks, Imogene

Hi Jessica, If you would like to help sponsor our site, please contact me: Jeanne@medrise.com. We are offering opportunities to all companies involved creating, inventing or offering products for our community. We appreciate your efforts. Jeanne

http://m.youtube.com/watch?v=C5avme09utQ&desktop_uri=%2Fwatch%3Fv%3DC5avme09utQ