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Erin's Page

Tennessee CF Cycle for Life 2019

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Fundraising Progress

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Raised: $12,600.00

Goal: $1,000.00

Welcome to my Page

  • This was the day we received Levi's first genetic modifying drug, Orkambi

Thanks for stopping by. I'm a mommy to two active, funny, beatiful kids. Levi loves baseball and hockey and started Kindergarten this year. Carolina Mae (C Mae) loves singing, dancing and just started ballet. They are normal kids, but they both have a genetic disease called cystic fibrosis. CF is a condition that creates thicker mucus in the body, leading to lung damage, GI issues and other organ failures. 

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. Still, that's just not good enough for me. 

I am raising money for the CF Foundation, because I truly believe this is the best way I can help save my children's lives. We are on the verge of new drugs, new treatments and medicinal advancements that will allow them to lead a full and active life. This is my mission as a mom. Help me find a cure!

My husband and I spend about 3-4  hours a day administering breathing treatments and chest percussions to help keep Levi and Carolina's lungs healthy, in addition to remembering their daily list of medicines. It seems overwhelming, and it was at first, but I know CF moms before me would have given anything to have the treatments we do today.

I am both scared, but excited for the future as we learn of new advancements that will help all CF patients. 

I promise you that a gift to the CF Foundation is one that will directly go to drug research for drugs like Orkambi, Symdeco and Tezacafter and other new therapies to help fight Levi and C Mae's specific genetic mutations Double Delta F508. 50% of all CF patients carry at least one of these genetic mutations, but there are 1,800 different mutations that have been discovered, so the more research we can assist with the better the outcome of everyone with CF now and in the future.

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