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  • On seeing this slide many envisage love, passion, joy, happiness,
  • Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation USA in 1965 after learning that her three little boys had CF. Her duty was to call 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 the 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. With some trepidation, Mary posed the question, What am I working for, Richard?""You are working for 65 Roses," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary's cheeks as she stammered, Yes Richard, I'm working for 65 Roses.“He could not see the tears running down Mary's cheeks as she stammered, ”Yes Richard, I'm working for 65 Roses.“CF WEEK Dates
  • Cystic Fibrosis (CF) is one of the UK's most common life-threatening inherited diseases.Cystic Fibrosis affects over 8,500 people in the UK.Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.Each week, five babies are born with Cystic Fibrosis.Each week, two young lives are lost to Cystic Fibrosis.Around half of the CF population can expect to live over 38 years, although improvements in treatments mean a baby born today could expect to live even longer.
  • THE FUTURE & WHERE DONATIONS GO
  • Transcript

    • 1. Sixty-Five Roses
    • 2.
    • 3.
      • CF is one of the UK's most common life-threatening inherited diseases.
      • 4. Cystic Fibrosis affects over 8,500 people in the UK 3 in 25,000 of the population.
      • 5. Over 2million people in the UK carry the faulty gene that causes Cystic Fibrosis 1 in 25 of the population.
    • 6.
    • 7. Survival of the Fittest…
      The ∆F508 mutation occurred over 50,000 years ago in Northern Europe
      Individuals with two copies of ∆F508 get Cystic Fibrosis and often cannot reproduce.
      Peoplewith one faulty copy are carriers and research suggests that this prevents water loss during cholera, greatly increasing chances of survival.
    • 8.
    • 9. Treatment
      Intravenous Injection’s
      2-week course, every 3 months.
      Physio
      30 mins a day
      3.5 hours a week
      180 hours a year
      Nebulizer
      2x30 min sessions a day
      7 hours a week
      360 hours a year
      Pills
      30 a day
      210 a week
      450 a month
      11,000 a year
      & Diet…
    • 10. the best bit…
    • 11.
    • 12. Straws
      at the
      Ready!!
    • 13. and…..breathe….
      to remind your lungs why they like the taste of air….
    • 14. Just like life...
      CF is a roller-coaster
    • 15.
    • 16.
    • 17.
    • 18.
    • 19.
      • Gene therapy
      • 20. Lung reconditioning
    • FYI - That needle has to go somewhere that’d bring a tear to any man’s face
    • 22. CF Week
      8th – 14th May 2011
      Any questions…Please come and speak to me!
      http://www.cftrust.org.uk