Our first 2 years walking Great Strides, we were Allison's Army. In 2017, we welcomed our sweet Levi who unfortunately also has cystic fibrosis so we are now Team CF FYTRZ!
Having both of your children diagnosed with something as nasty as cystic fibrosis is almost indescribable. It's heartbreaking, angering and it makes you second guess all of the hopes and dreams you have for them. Cystic fibrosis is a genetic, chronic and progressive disease. It's been almost 5 years since we first became acquainted with CF, but we still have so much to learn. Both Allison and Levi started showing symptoms of CF before they were even born, so they have both truly been "FYTRZ" since day 1.
Allison and Levi are doing very well and are truly our heroes. They each require digestive enzymes before they are able to eat. Allison takes 20 pills per day and Levi takes 16. They each do their vest treatments for 40-60 minutes every single day when healthy, and even longer if they're sick. They each do saline sinus rinses every day and a few other small things and that's all just routine "maintenence"! The FDA approved Orkambi which treats the underlying cause of CF to be taken in kids with CF as young as 2 years old so Allison and Levi are both eligible for it!
Last year I mentioned the miracle triple combo drug that was up for FDA approval. Well, BECAUSE OF YOU, it was approved quicker than ANYONE expected!! So...90% of the CF population now has a modulator that treats the underlying cause of CF. The trial results and results from people that are taking it now are absolutely remarkable! Here's the downside...there's still the 10%. 10% of people with CF have no drug out or even in the pipeline to treat their CF. So we walk for them. We walk for the drugs that are yet to be discovered. We walk to put money directly into the hands of our super heroes in lab coats so they can keep working on making CF stand for Cure Found.
NONE of this would be possible without Great Strides. That's where you come in! The U.S. government doesn't provide any funding to the Cystic Fibrosis Foundation because of its rarity with roughly 30,000 people in our country living with CF. We will not stop fighting until everyone with CF has a cure! "Until It's Done"
We have a big team fundraising goal this year of $5,000 and I know we can hit it! The CFF and Vertex are working so hard for everyone battling this horrible disease and they need us! We would not be where we are today without your support and we are eternally grateful for all of you. Thank you for joining/donating to Team CF FYTRZ. Allison and Levi have some really amazing people in their lives! To become a member of our team, just click on the "Join our Team" button. From there you can make a donation and start your fundraising, create your own personal funsraising page and SHARE SHARE SHARE!
By becoming a member and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.