Dear Friends and Family,
The Great Strides walk for Cystic Fibrosis research is rapidly approaching! We would love for you to join Colt and Willow at our Great Strides walk at the Austin Zoo on May 4th at 10am to help fund more research for Cystic Fibrosis (CF).
Sign up at http://fightcf.cff.org/goto/Aja2019
Watch our fun "Harry Potter" themed video update on YouTube and learn what they do to fight CF.
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 several new medicines, Kalydeco, Orkambi and Symdeko that help the CF channel work in almost half of those with CF. Colt and Willow only have one copy of the DF508 mutation, so they will need a 3rd medicine to add to Symdeko to help fold the channel properly. The clinical trials for several medicines that we hope will work for them showed great results and we are hopeful for FDA approval in adults soon! Then they will start clinical trial for kids age 6-11 years old and your donation today will help them get this trial funded! You can make a difference!
There are several ways you can help Colt and Willow. You can become a teammate and walk with us at Great Strides or walk virtually if you live too far away or walk in your local area. If you don't have time to walk, you can donate to the CFF or share our story. The South Austin walk will be on May 4th at the Austin Zoo with the check-in at 9am and presentation at 10am with time to explore the zoo.
We hope you join our team, either by walking with us or donating to fund more research at http://fightcf.cff.org/goto/Ajas2019
Nicole, Dan, Colt and Willow