Nicole's Page

South Austin 2017

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Raised: $27,242.23

Goal: $30,000.00

My Great Strides Story

  • Colt & Willow
  • Aja Family
  • Play Video

Dear Friends and Family,

You may know Colt and Willow from school, church or their many sports activities.  They look just like the rest of the kids, but inside their bodies are fighting a battle against one small channel that doesn't work properly.  This defective channel causes them to have Cystic Fibrosis (CF).  We are walking at Great Strides events throughout the country to help fund more research.  Join us at your local walk or at the Austin Zoo on May 6th at 10am to help show your love and support to Colt & Willow.

Watch our fun "Star Wars" themed video update and learn what they do to fight CF.  Watch until the end to see them fight Darth Vader. https://youtu.be/5Kj6_bdiHkA

Cystic Fibrosis is a devastating genetic disease which primarily affects the lungs and pancreas of approximately 30,000 children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation (CFF)  are making a huge difference in the lives of those with CF.  The CFF has helped discover two new medicines, Kalydeco and Orkambi, that help the CF channel work in 58% of those with CF.  Kalydeco helps open the gate of the defective channel. Orkambi has an additional compound that helps fold a specific genetic mutation of CF (DF508) into the proper shape.  Colt and Willow only have one copy of the DF508 mutation, so they will need a second compound to help fold the channel properly.  The CFF has multiple trials to find medicine to help them breathe.  The CFF is also helping fund CRISPR/Cas9 technology to "edit" the defective gene for those with CF.  This could be the "Cure" that we are hoping and waiting for.  All of this research takes money.  We are hoping you will help us get one step closer to the cure.  

This year both Colt and Willow had gotten sick enough to need IV antibiotics and we were thankfully able to do treatments at home.  Colt had a tough infection to treat and required 6 months of 3 combined antibiotics.  We just finished his antibiotic regimen and we are hoping the infection does not come back and his lung function will improve.  It has been a tough year, but the medicine from the CFF is helping them live longer and healthier lives every day.

How can you make a difference?  Please become a teammate and walk with us at Great Strides, donate to the CFF, start a branch of the Aja's Amigos near you or share our story.  The South Austin walk will be on May 6th at the Austin Zoo with the check-in at 9am and walk starting at 10am.  We will again have lunch provided by Hat Creek Burgers!

We hope you join our team!
Our Love,
Nicole, Dan, Colt and Willow


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