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10/04/2007 Update: My donation page has been chosen as the Firstgiving Fundraiser of the Week. Alison at Firstgiving has written a nice blog (http://firstgiving.typepad.com/communityblog/2007/10/fotw-or-acing-t.html) about my fundrasing efforts.
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10/01/2007 Update: I have been really busy with work lately so I apologize for the lack of updates. It's been about 13 days and we have almost reached the half way point. Thanks to everyone who has made a donation or forwarded the email to your friends and family. Ashley over at the Utah Chapter talked to Firstgiving and straightened out all the details and has made sure that they have the correct information for the Utah Chapter.
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09/19/2007 Update: WOW, didn't expect much on the first day and to my suprise we hit $652.00. Thanks to everyone who has made a donation we really appreciate it! I have made some changes to text below and will have updates from time to time so keep checking back for updates! THANKS!
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HI EVERYONE! My name is Shane McNeill and I want to thank you for visiting my fundraising page! I'm hoping to raise $5,000+ for Utah Cystic Fibrosis Foundation. My goal is to get $5,000 raised before this year’s ninth annual Taste of Salt Lake and present them with a check on Saturday, November 17th 2007.
"65 Roses" (http://www.cff.org/aboutCFFoundation/About65Roses/) is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. All this information and more can be found at http://www.cff.org/AboutCF/.
I have always wanted to be more active in raising money for the Utah Cystic Fibrosis Chapter, but just haven’t had the time. For example this year they had Macy’s Shop for a Cause and Gateway to Giving, but I don’t like shopping. Also, every year they have the GreatStrides walk, but I don’t get out enough to exercise and probably wouldn’t make it down the block. Then I ran across the website FIRSTGIVING and thought to myself this is the best/easiest way I can raise money because I can create a website and email it to all my friends and family and in turn have them email it to their friends and family. Eventually we will have hundreds of people emailing this website to their friends and family so everyone can make even the smallest donation to help find a cure for Cystic Fibrosis.
When my little sister SOMER was born, my parents found out that she had CF through a "Kiss Your Baby Campaign". The sponsers of the campaign said if your baby tasted salty when kissed have the child checked for CF. My parents didn’t know much about CF, but over time they have learned a lot about it. As I got older I also learned about CF and helped with her treatments by pounding/beating my sister. :) When she was in the hospital at 7 years old she won an award for her Christmas card and has been painting ever since. There was a time when we all flew to Tiawan to meet a recommended doctor and pick up some Chinese herbal medication in packets that she had to mix in her applesauce, which smelled really bad and looked disgusting. Over the last 28 years my parents and sister have researched much more about CF. Now Somer tells the hospital staff how to do things when she goes in for her hospital stays. She is usually in the hospital for at least 6 to 8 weeks every year to receive high doses of antibiotics through her portacath, which is a permanent I.V. Some of us know it as her "Thipple." She always has the best decorated room in the hospital and uses an answering machine to catch her missed phone calls. Our parents are founders of the Utah Cystic Fibrosis Chapter and both of them along with my sister are very active supporters of this organization. My mother is currently on the Taste of Salt Lake board and my dad works with the CF golf tournaments. My sister is also on the Taste of Salt Lake board and is sponsored by various drug manufactures as a motivational speaker for other Cystic Fibrosis families. I thought this would be a good way for me to get personally involved in finding the cure for this debilatating disease.
About a year ago, before our daughter Makena was born, my wife and I had to get tested because there was a chance that I was a carrier of the defective cystic transmembrane regulatory (CFTR) gene. My test came back and it was inconclusive so they had to do additional testing on me. I ended up going to Primary Children’s hospital to get a sweat test (http://children.webmd.com/Sweat-Test). Since they usually do sweat tests on children to determine if a child has cystic fibrosis they had to rig the machine to be able to get the equipment around my arm. The test came back a few days later and I was told that I had a rare mutated gene that was dormant so I’m a carrier of CF, but since my wife Tammy doesn’t have the defective gene our daughter will not have CF.
So if possible, PLEASE make a donation through this website. Its simple, fast, totally secure and a way you can help support my fundraising efforts.
MANY THANKS FOR YOUR SUPPORT -- and don't forget to forward this to anyone who you think might want to help out too!