My Xtreme Hike Story

Dear family and friends,

This year I have signed up to participate in my 3rd Xtreme Hike for Cystic Fibrosis. On August 24th I will climb about 15 miles on another one of the Adirondack 46 High Peaks! Cystic Fibrosis (CF) is a progressive, genetic disease that causes long-lasting infections and limits the ability to breathe over time. In the lungs of those with CF, thick, sticky mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other fatal complications.

I have witnessed the day in and day out routines, the limitations, the small victories of new medications, and unfortunately, the heartbreaking loss of a friend to this disease. As a young girl, I watched a close family friend fight CF every day, and when CF started to win the fight, she received a double lung transplant and began the long road to recovery and a whole new set of daily regimens that transplant patients must follow to continue to thrive. Then as a teenager, I met a young man who was diagnosed with CF as a young child. His CF was advanced, and his lung function was severely compromised. Sadly, a few short years later at the age of 25 he passed away. Unfortunately, this was not the end of watching those close to me battle CF as one of my long-time childhood friends has two children with CF, Grace, 18 and Joey 16.

Grace and Joey inspire me every day with their courage and determination. They do not let CF stand in the way of enjoying life, despite the fact there is never a break from this disease or the daily routine of treatments. Grace and Joey have had to endure countless hospitalizations, surgeries, biopsies, scans, a port placement, endless medications, and Grace, a diagnosis of a rare, progressive kidney disease caused by CF. Yet they still manage to smile and remind us that we cannot give up hope. 

It is only through continued research that we continue to move one step closer to finding a cure. Recently developed drugs and therapies that treat the symptoms of CF have helped to improve lives, but we still need to find a cure for this progressive, life-threatening disease that ravages the lungs and digestive system of children and young adults.

I am hoping you can find it your heart to help me reach my fundraising goal of raising $3,500. Your contribution will enable the CF Foundation to continue to pursue research that will lead to new treatments and drugs for the benefit of all those who live with this disease. Although we have made great strides, it is not enough given that precious lives are lost to CF every day. My hope for the near future is that CF will no longer be referred to as a ‘fatal genetic disease’ but rather a ‘curable genetic disease’.

Thank you so much for your support and helping to make CF stand for Cure Found!

With gratitude,

Maria