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FestivAle Sept 30th at DANK Haus

Scribner Malloni

Scribner Malloni

As part of my Chicago's Magnificent 10 week fundraising challenge I am encouraging you all to join me at the FestivAle Beer Tasting!  Your ticket will go towards my fundraising goal to help me reach my goal of making CF stand for CURE FOUND!

The Cystic Fibrosis Foundation has fueled dramatic improvements in cystic fibrosis research and care. Because of the Foundation, people with CF are living longer and healthier lives. The outlook for people with CF continues to improve year after year.

Thank you in advance for your support and participation to this event, you are helping to make a difference for people living with CF.!

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4

Meet Elizabeth! She is 6 yrs old, my son’s good friend, loves to bake, wants to be a dress designer when she grows up and has Cystic Fibrosis. For my son Cystic Fibrosis means they get to hang out playing Mario Cart or watching movies for 1/2 hour in the afternoon while Elizabeth does her physical therapy. This entails her wearing a vest that pulses to help loosen excess mucus in her lungs while she wears a nebulizer mask to administer medications to thin the mucus making it easier to expel. While it is a highlight of the kids day to get some screen time I know it is just one piece in daily regiment that is required to keep Elizabeth healthy. Without these treatments aggressive, antibiotic resistant bacteria can take hold and cause permanent lung damage that eventual leads to lung failure for many CF patients. Elizabeth does have to do twice daily physical therapy and take numerous pills and inhaled medications each day but she is actually one of the most fortunate CF patients. Because of her specific mutation that causes her CF she was among the 1st to get to take advantage of new medications at an early age that have changed the course of the disease. In fact she has not been hospitalized since she started them and has her best chance to live a normal life because of them! These medications do not work for all mutation of CF however. By her age most kids with CF are already suffering with the progressive, permanent lung damage that will ultimately shorten their lives.

Elizabeth & Ayres Hanging Out For Her Daily Therapy

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$1,435
raised of $500 goal
 

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