Taking Steps to Cure Cystic Fibrosis

The CCF and Canadian CFF have done amazing things to better our lives and it is only a matter of time and money before the cure is found. i believe it will be within the next 10 years. Diagnosed at 15, I was told I would not live to see 30. Because of the medical advances spearheaded by the Foundation I KNOW the work they do is so important - I am living proof! We are now light years away from the mist-tents kids slept in in the 60's...hours of hysiotherapy...deaths at such early ages. New therapies, new drugs on trial...not government funded, but through the Foundation and PUBLIC support and dollars. God Bless them!

46yrold CFer in Canada wrote:

The CCF and Canadian CFF have done amazing things to better our lives and it is only a matter of time and money before the cure is found. i believe it will be within the next 10 years. Diagnosed at 15, I was told I would not live to see 30. Because of the medical advances spearheaded by the Foundation I KNOW the work they do is so important - I am living proof! We are now light years away from the mist-tents kids slept in in the 60's...hours of hysiotherapy...deaths at such early ages. New therapies, new drugs on trial...not government funded, but through the Foundation and PUBLIC support and dollars. God Bless them!

keeeep n touch...plz email/I HAD CF DIAG 3MO OLD/NOW 30 SEPT/NEED LUNG TRANSPLANT/MALACHI/MO. JULY 2006

Cystic Fibrosis Trial Information: Share International Foundation

Summary: Share International Foundation is currently seeking cystic fibrosis patients to participate in a study to determine the efficacy of a novel supplement to treat this condition. Share is a non-profit organization whose purpose is to research new therapies for cystic fibrosis.

Overview: After extensive research, Share has developed a supplement which may address the basic defect of cystic fibrosis. Share hypothesizes that the basic defect of CF results from an intracellular imbalance of several compounds in the CF cell, due to faulty trafficking of a defective CFTR protein. The active compound of Share’s supplement, benzyl-isothiocyanate, is a natural substance, derived from papaya seeds. Share hypothesizes that this compound will activate an alternate channel in the cell, the multi-drug resistance protein (MDR), and, in doing so, help restore cellular balance.(See Pubmed article 16934416 for more details).

Purpose: Because fatty acid levels are generally abnormal in CF patients, the purpose of the trial is to determine the effectiveness of the supplement, and to measure the extent of its effect in regulating fatty acid levels.

Process and Duration: After having passed the screening process, subjects will participate in the trial for approximately four weeks. At the outset, a blood test will determine the baseline level of fatty acid composition. For three consecutive weeks, blood tests will be conducted once a week to compare fatty levels with the baseline.

Inclusion Criteria:

- Male subjects, aged 18 years or older.
- Delta F508 homozygote.
- South Florida resident, or be able to travel to the South Florida area.

A $400.00 stipend will be paid to each subject who completes the trial.

Contact:

Shirley Zahn

Palm Beach Research Center

Shirley@palmbeachresearch.com

Jim@Sharktank.org