aviolentworld Posted March 8, 2016 Share Posted March 8, 2016 That time again. Just got my CF walk information for the Cleveland Zoo on 5/14 and figured it would be a great time to make yet another thread. Below is a photo from last years walk and a couple others. Also put in some info about my girls the past year. thanks for taking some time to read through the thread. Update from my wife's CF page. Every year, our family walks to support the Cystic Fibrosis Foundation. Before the age of 1, our twin daughters were diagnosed with CFTR-related metabolic syndrome (CRMS). What is CRMS ---> http://www.cff.org/aboutcf/testing/genetics/crms/ They do not have cystic fibrosis. They have one CF causing genetic mutation and 1 variant mutation that when paired together may cause mild cystic fibrosis in the future... (breathing or gastrointestinal issues caused by thicker mucus in thier bodies). Reagan and Alexis saw their pulmonologist in August. At that time, their first lung function test showed some changes, despite another year of minimal symptoms. We spent many meetings discussing and deciding a course of action. The girls visits were increased to every 6 months. In the meantime, a nasty respiratory virus had them coughing for weeks. In August we were also given updated sweat testing results as we were somehow given only Alexis' results in 2014 and not Reagan's. Those diagnosed with CF have levels that are higher than 60. Healthy individuals score less than 30. Reagan scored 61 and 52. Alexis scored 49 and 51. Their pulmonary testing in January continued to show mild changes (similar to those in August), but confirmed. The girls will probably be having CT scans this coming summer of either the sinuses or lungs. If either show signs of cystic fibrosis, our pulmonologist has discussed giving the diagnosis of atypical CF and starting lung treatments. They are having no stomach issues or weight problems at this time. Our children's diagnosis has opened our eyes to the devastating effects of this terrible disease and we want to help bring a cure to those who are suffering from this illness. Your donation can help develop life saving curative treatments and medications. ANY donation is welcome and VERY appreciated. Thank you!!! Click the link if you would like to know more about CFTR related metabolic syndrome. http://www.cff.org/A.../Genetics/CRMS/ any donation is greatly appreciated. even if its a couple bucks!!! thanks dudes and dudettes. http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1774452&pg=personal&fr_id=4805 videogamesandvinyl, batman, KingTacoMunster and 1 other 4 Quote Link to comment Share on other sites More sharing options...
videogamesandvinyl Posted March 9, 2016 Share Posted March 9, 2016 Bumping this b/c this is a good fucking dude right here. Help a fella out people! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted March 11, 2016 Author Share Posted March 11, 2016 Bumping this b/c this is a good fucking dude right here. Help a fella out people!Thanks man I appreciate it. videogamesandvinyl 1 Quote Link to comment Share on other sites More sharing options...
controlthebleeding Posted March 12, 2016 Share Posted March 12, 2016 Next Friday mann.. i'll donate my usual.. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
TheGhostOfRandySavage Posted March 12, 2016 Share Posted March 12, 2016 Buuuuump. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
somethingvinyl Posted March 13, 2016 Share Posted March 13, 2016 Waiting for pay day and will donate. Rad dad award. And man, your girls are getting so big! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
futures Posted March 13, 2016 Share Posted March 13, 2016 donated! your girls are so cute i wish them and the rest of your family a long, happy, and healthy journey in life! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted March 25, 2016 Author Share Posted March 25, 2016 updated the main page with more information about the past year and my girls. Thanks again to everybody. Quote Link to comment Share on other sites More sharing options...
scottheisel Posted March 25, 2016 Share Posted March 25, 2016 Donated! Good to see your girls doing well. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
KingTacoMunster Posted March 25, 2016 Share Posted March 25, 2016 Glad your girls are doing good! High five aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted March 25, 2016 Author Share Posted March 25, 2016 Donated! Good to see your girls doing well. Glad your girls are doing good! High five thanks guys. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 1, 2016 Author Share Posted April 1, 2016 bumpin for a good cause Quote Link to comment Share on other sites More sharing options...
SleepingWithMotion Posted April 1, 2016 Share Posted April 1, 2016 Bumpin. This guy isn't trying to raise thousands of dollars. We are $150 away from the goal! 15 people donate 10$, or the price of one record. help change someone's life! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
controlthebleeding Posted April 2, 2016 Share Posted April 2, 2016 done aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 5, 2016 Author Share Posted April 5, 2016 done thanks dude. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 9, 2016 Author Share Posted April 9, 2016 thanks to everyone who as donated so far. a little more than a month away bump Quote Link to comment Share on other sites More sharing options...
thedillon Posted April 9, 2016 Share Posted April 9, 2016 Donated!!! Awesome cause! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 10, 2016 Author Share Posted April 10, 2016 Donated!!! Awesome cause! damn this is awesome with your donation and my neighbors i am at my goal of 200 dollars. now lets crush this thing. thanks again edit. just checked and my team has raised 435 dollars so far. hoping to reach a K by walk time thedillon and scottheisel 2 Quote Link to comment Share on other sites More sharing options...
somethingvinyl Posted April 14, 2016 Share Posted April 14, 2016 Done. Can't do a lot but I wanted to help. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 17, 2016 Author Share Posted April 17, 2016 Done. Can't do a lot but I wanted to help. thanks brother. somethingvinyl 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 1, 2016 Author Share Posted May 1, 2016 2 more weeks bump. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 10, 2016 Author Share Posted May 10, 2016 My team has raised 1115 so far. That's pretty damn awesome. Couple more days to help out and thanks again to everyone who donated so far. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 14, 2016 Author Share Posted May 14, 2016 Alright we walk tomorrow. Team has raised 1650 so far. Thanks again everyone. Quote Link to comment Share on other sites More sharing options...
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