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Katarina

About Me

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ABOUT 65 ROSES "65 Roses" is what some children with CYSTIC FIBROSIS (CF) call their disease because the words are much easier for them to pronounce. Mary G. Weiss become a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to cell every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into room and told his Mom, " I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. Whit some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.1938. scientist develops the first comprehensive description of cystic fibrosis symptoms. It is 2007. now and the cure for CF has not found yet... Seeing is believing but I don't want to know Walk on through the wasteland I just can't let go Face down I just break down when I see you cry All the timeHold on Please (behind those grey and lonely eyes) Hold on To me (unforgotten by time) Tempt fate Release (Reality is dawning) EscapeSomeone now is screaming as the flames fly high Think now that we're lost here and we don't know why Face down I just break down when I see you cry All the timeHold on Please Hold on To me Tempt fate Release EscapeBehind those grey and lonely eyes Unforgotten by time Reality is dawning Our spirit is awakening And somewhere in the hurricane Hope is waiting Crying in the distance And calling out your name

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...like my friend say:"the oldest CFer alive...to shake his hand..." I don't have CF,but my son has.LJUDE U SRBIJI KOJI IMAJU CISTICNU FIBROZU ILI IMAJU BILO KAKVE VEZE SA ISTOM!!!U nashoj zemlji se vrlo malo zna o CF.Ima oko 200 obolelih u Srbiji.Leka nema.Klinika u Srbiji ne postoji,dok u USA ima u jednom gradu nekoliko.Sad radimo na obnavljanju udruzenja za pomoc obolelih od CF. Sto je “kvalitet” zivota bolji(ishrana,aparati,lekovi…) to je zivotni vek duzi.Lechenje je dosta skupo(lek ne postoji)Do pre nekoliko godina lekovi su se teshko nabavljali,stizali samo do pacijenata kojima su bili najpotrebniji,placali…normalno u Srbiji se ne mogu naci u apotekama,sad se dobijaju preko bolnice-oni najpotrebniji. Primer: Kreon 25000(20 kapsula)-120$ Pulmozyme(6 ampula)-1 300$ Toby(antibiotic)-3 400$ Vest(aparat)-19 000$ Prosek zivota u Srbiji je oko 20 god.,u Americi 36,8 ;a u ne razvijenim zemljama teshko dostize 10 godina.Nada postoji,ulaze se dosta u gensku terapiju(jer CF je genetsko oboljenje) THIMBLE ce svirati(u planu) na koncertima za pomoc obolelih od CF,gde god koncert bio. Treba da ujedinimo snage,svaki sekund je bitan,svaki se minut rachuna,moramo biti dovoljno brzi jer CF vremenom (kod pojedinca)evoluira-postaje sve jacha!

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