My Xtreme Hike Story

We all wake up each day curious, in anticipation, as to what TODAY is going to bring us or lead us too. For the people that live with Cystic Fibrosis, I can only imagine, their anticipation is filled with more due to the knowledge of their situation (chest/vest therapy, taking multiple medications throughout the day, nebulizers…) What I can say based on observation is that for many who live with Cystic Fibrosis their anticipation for the day has changed in a positive way…. New medications are available for some and the impact is observed to be powerful in a significant way. These individuals are now able to focus more on what they want to do to make TODAY a good day, versus what they need to do to get through today. Many of these individuals are no longer dependent on the chest/vest therapy, not taking as many medications, more energy, and lung functions are stronger. What a BLESSING!

Last year at our Xtreme Hike, I made the comment that it is so nice to hear the change in the stories that individuals and family members are sharing about living with Cystic Fibrosis. Hearing the positives and enjoying life in such a different manner - a different outlook! What a joy to have more persons with CF hiking - What an INSPIRATION!!!!  Josey is one of those hiking and what a joy to be hiking with her. 

What makes the life changing attitude, lifestyle, and mood possible is YOU! Your continued support in donating to allow the cystic fibrosis foundation to continue in research and developing new medications that make a positive difference for those living with Cystic Fibrosis. Not every person with CF can take the latest medications due to their gene mutation. Our goal is to have CF stand for CURE FOUND for every person. 

“Cystic fibrosis, a rare, progressive, life-threatening disease, results in the formation of thick mucus that builds up in the lungs, digestive tract, and other parts of the body. It leads to severe respiratory and digestive problems as well as other complications such as infections and diabetes. Cystic fibrosis is caused by a defective protein that results from mutations in the CFTR gene. While there are approximately 2,000 known mutations of the CFTR gene, the most common mutation is the F508del mutation."

I will be hiking again this year in the CF Xtreme Hike. We will be in the Massanutten area the weekend of September 28, 2024. We hike 26ish miles in one day to raise awareness and funds for Cystic Fibrosis, with the ultimate goal of saying CF stands for Cure Found. This event has become a life changing event for myself, brought me more blessings than I can say, a humbling experience. 

I hike for all who have cystic fibrosis, but my true inspiration are my niece and nephew, Josey and Ethan. They are both benefiting from the latest medication and WOW! How life changing. Lung functions are in the high 90’s, not dependent on vest therapy on a daily basis, not dependent on all the other medications. Josey is a beautiful, vibrant, young woman, working full-time, developing her plans for her future. Ethan is a fun, conscientious, kind, young man at Hampden-Sydney College working hard to complete his education and doing it well.  

I ask you once again to join me in supporting the effort to make Cystic Fibrosis stand for CURE FOUND! Take a moment today and do something kind and thoughtful for someone else - make a donation to change someone else’s life. 

You can make personal donations online, http://fightcf.cff.org/goto/primbey2024 today! We cannot do it without YOU! As their aunt, I can say on behalf of the family, we remain forever grateful for your diligent support and generosity over the years and now. Without you and your help, progress towards a cure would not be as close as it is today.

Happy Trails….

Many Blessings, 

Patty

Waltons’ Warriors