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On Saturday June 15th, our family will be participating in the Cystic Fibrosis Foundation’s Cycle For Life in Sonoma County. This ride raises money for Cystic Fibrosis research, a cause which is near and dear to us given Taylor has CF and her Uncle Tom lost his life to the disease at just 21 years of age.
Just last week, David and I attended a research update on CF drug development. Taylor's doctor pulled us aside to let us know a new triple drug combo which we have heard about since Taylor was a toddler is wrapping up the third and final phase of FDA clinical trials. The results? Not only are patients gaining back lost lung capacity, but also issues like their CF Related Diabetes (which Taylor now has) are going away because the new drug is addressing the underlying defect of the faulty CF gene which wreaks havoc on the body's organs with a thick, sticky mucous.
I hope you can imagine the hope this news gave us for Taylor's future. Her Cystic Fibrosis continues to progress as she ages despite religously doing her prescribed treatments and medications which include:
- 2 hours of breathing treatment a day with 3 different nebulized medications and 40 minutes of chest PT
- 6 different oral medications for a total of 26 pills a day
- Twice daily insulin shots and fingersticks for her newly developed CF Related Diabetes
- Swimming 6 times a week for a total of 11 hours as an additional way to keep her lungs clear and to keep her lung capacity up. (Kudos to her twin brother, Tom, for doing this with her!)
If this new drug or any others in the pipeline can help control the effects of the disease on Taylor's body, or possibly even cut down the number of pills she needs to take or hours of treatment she needs to do, we're all for it!!!
HOW CAN YOU HELP?
Make a donation today. Click on "Donate to Me" above. Any amount is appreciated and every single dollar counts.
Ride with us. It’s not a race and there is plenty of support to make it a guaranteed enjoyable and rewarding experience. David will be out there on the long course and Taylor, Tom and I will be out there providing support to the riders at aid stations and the finish line.
Forward this message along to any of your friends and family who may be interested in donating or participating in our ride.
Thank you in advance for any and all support. It means a great deal to us knowing our friends and family are behind us in the fight to find a cure for Cystic Fibrosis.