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Dan's Page

Pittsburgh CF Cycle For Life

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Raised: $22,455.00

Goal: $25,000.00

Welcome to my Page

Thank you for visiting my page and Thank you to anyone who has previously donated.  Anyone is welcome to join in with a donation this year.

Amelia and Penelope are my grand daughters.  Amelia was diagnosed with Cystic Fibrosis (often refered to as CF) at 6 days old.  Since then she's fought every day to stay healthy.  She's funny, smart, and likes to make "Pop Pop" (me) play with her while she does her Physio Therapy (lung clearing).  In May of 2015, we welcomed Penelope Jayne. She too was born with CF.  She spent the first 74 days of her life in the hospital with a stoma (her bowel was cut and a bag was added) because when she was born she had a blockage in her bowel due to CF. She's a spunky, crazy, fearless little girl with a big toothy grin!  

As you may remember, last year I updated that the girls were starting on a drug called Trikafta. A year later I'm happy to report that both of their lung function tests show that their lungs are working over 100%!  Their salt chloride levels are borderline normal!  Their CF is not cured, and Trikafta isn't the final solution (there's side effects and other issue but it's a great stop gap while we wait for a cure) but we are getting close!  And Trikafta, as well as the new treatments on the horizon were 100% privately funded by donations from people like you! 

Cystic Fibrosis is a Genetic disorder that affects Amelia's and Penelope's lungs and digestive system.  It creats a sticky mucus in the lungs which leads to scarring and eventually failure of the lungs.  In addition roughly 1/3 of people with CF develop CF related Diabetes.  CF also prevents natural enzymes from reaching the stomach, leading to failure to thrive issues and difficulty maintainting a healthy weight.  Average life expectancy was in the mid 30's but that has been steadily improving, now in the mid 50's, because of donations to foundations like the Cystic Fibrosis Foundation.  Today great strides are being taken in the search for a corrector and a cure.  We are getting closer, but we still need your help!

 

 

 

 

My team is trying to raise $25,000.00 for the cystic fibrosis foundation.  Please consider donating and helping Amelia and Penelope add to there tomorrows.  

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