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aviolentworld

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Everything posted by aviolentworld

  1. hit me up folks. going to the post this saturday.
  2. a couple more weeks until my walk. thanks to anyone that has donated so far.
  3. Friendly reminder for those that want to donate to a great cause.
  4. I am about 20 minutes from Destin Fl. staying in Niceville Fl. I did a little search on Google but figure I would ask for recommendations here. I listen to alot of metal and punk. Thanks for any info in advance.
  5. give me something to do this weekend.
  6. EDIT - Posting this very late this year. I bumped the page from last year and updated the info below about my girls and their diagnosis. I will update their photos when I get a second since the ones below are a bit outdated. Thanks for taking a look. That time of the year again. My Family walks at the Cleveland Zoo every year and raises money to help fight this terrible disease. Scroll down a bit for some info about my girls and learn about CF and what my girls have. Some pics and newest update below for those that are interested. Every year our family walks to raise money for the cystic fibrosis foundation. At the age of one, we found out that our twin daughters have a diagnosis called CRMS or CFTR related metabolic syndrome. What is CRMS ---> https://www.cff.org/What-is-CF/Testing/CFTR-Related-Metabolic-Syndrome-CRMS/ They carry one classic mutation and another variable mutation for Cystic fibrosis. Their most recent sweat tests in 2017 revealed that the amount of salt in their sweat was high enough to diagnosis cystic fibrosis. What they haven’t developed at this time is clear cut symptoms, so they’ve remained under the diagnosis CRMS. We are so unbelievably grateful for their health. We luckily do not have any new issues to report this year. The pictures attached are from 2017 when the girls took their last sweat tests and when they learned how to do airway clearance for when they are sick. What their diagnosis means is still quite unknown to us. They may continue to lead normal lives or they may begin to develop symptoms of atypical CF as they get older. In the meantime though, our eyes have been opened to how absolutely terrible this disease is and we want to help bring a cure to those who are suffering from CF. Your donation can help develop life-saving curative treatments and medications. ANY donation is welcome and VERY appreciated. Thank you!!! Link to donate below http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1774452&pg=personal&fr_id=6904
  7. going to the post office tomorrow. hit me up
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