Despite it all, Abby's Army walks again! It is that time of year again when we ask you to dig into your pockets and help support our fundraising efforts to raise money to help us find a cure for cystic fibrosis.
This year is unlike any other. COVID-19 has turned the world upside down. Yet, the fight against cystic fibrosis marches on. As a person with cystic fibrosis, Abby is considered to be in a high risk category for COVID-19. We are being incredibly cautious, but we are concerned for our girl.
However, despite these scary times, there's also news of joy in the CF community. On October 21, 2019, the FDA approved an amazing medication benefitting 90% of the CF population. This medication, called Trikafta, treats the basic defect that CF causes at a cellular level. Those who have started on Trikafta have seen weight gain (a good thing in CF!) and a significant increase in lung function. Abby started on this medication in December, and she's never been healthier. She's been able to recover all of the lung function that she lost from her bout with the flu several years ago and has gained over 7 pounds. To us, the medication is worth it's weight in diamonds.
So why must we stride? As wonderful as Trikafta is, it is not a cure. For Abby personally, its lifetime effects are unknown. She is still saddled with an hour a day of breathing treatments. She is still required to take handfuls of pills just to digest her food. She is still required to use a feeding tube at night to take in enough calories to survive. Where we are is not far enough. We need a cure --we continue to stride until it's done for Abby.
For the rest of the CF population, there is still 10% of the population who has no effective treatment to help correct the basic defect in CF. For those patients, there is no daily medication like Trikafta even on the horizon. The CF Foundation was founded by a group of parents in the 50's because their children were dying before kindergarten, and they refused to accept their fate. Their action has gotten us to where we are today. It's an amazing community that we are blessed and proud to be a part of, and we will leave no one behind. So, we also stride until it's done for our community.
The CF Foundation has never rested in finding better treatments and a cure. There are some amazing possibilities on the horizon that include CRISPR and a permanent fix to the CFTR protein. For more information about that, I encourage you to visit their website for more information about the path to the cure: https://www.cff.org/Research/About-Our-Research/Path-to-a-Cure-Many-Routes-One-Mission/
Abby's Army means so much to Abby. The walk is going to look a little different this year. All in-person events have been cancelled through the end of June, but we ask that you please join us for a virtual walk on June 5. Your financial and moral support would mean the world to us.
Mike and Meghann Abby and Dom Barloewen