If your local CF clinic provides one, definitely go. I have been trying to go ever since Cayden was diagnosed and finally five years later I made it! There was just SOOO much info to process. Here is a recap of my top 3!
1) Dr. Beall shared some amazing progress in drug development. Namely the "Pipeline" which he is referring to in terms of drugs currently in studies.
Start to finish a study drug can take up to 10 years to be available to patients. Even in phase three (the last and final) drugs have a 20% failure rate.
Just today, the first drug of its kind to correct the basic defect in patients with CF, made the spotlight:
New England Journal of Medicine Publishes VX-770 Study – CF Foundation
2) The most eye-opening moment of the entire day was hearing all the legal rights of CF patients. From tips on getting a job, health insurance, and dorm life I realized that there are bigger battles we have yet to face with our children. When I think about what the future holds it is simply scary and unknown.
3) Twins from Japan shared their amazing story of beating the odds and living into their 40s. Their story really reaffirmed what Chris and I are doing with our children. We keep their lives normal, we teach them responsibility and independence, and we allow them to "hate CF" (as long as there is a time and a place). It did raise some curiosity for me, as a mother. When will my kids ask me if they will die from CF? Even with all the hope and promise, the affirmation from the CEO of the CFF that transplant drugs more than likely will not be something we as a new generation should ever have to face, I have to be brutally honest. Because I know, and I am certain, that the day will come when they sense that CF is a threat to their life. That it is serious.
Read more about the Power of Two
Think about tomorrow only if it really matters, otherwise, live for today and your beautiful kids and wonderful husband, Tiffany!! :-)
ReplyDeleteGod bless!
Margie