My Xtreme Hike Story
Thinking back to June 2013 as I arrived at mile 26 of my first CF Xtreme hike feeling very banged up, I never imagined ever doing it again. But the overwhelming gratitude from the CF community, the amazing medical advances that have been made as a result of the fundraising, and the incredibly generous response from my friends and family changed that. As a result, on June 4th, I’ll be hiking my 10th Xtreme Hike with Patrick’s Posse.
The funds we raise from this hike have a direct impact of the level of CF medical research and advances that are made. Patrick has benefited from many of these including the breakthrough CF modulator Trikafta which he continues to use successfully. In fact, Patrick will be hiking with the Posse this year!! Yayyy!!!
I’d like to share another real time example of how these funds are working for the CF community. Our hike ambassador and CF patient from earlier years, Kate, has had a very rough last few years health-wise. It has been very difficult to see the toll CF has taken on her as the disease has progressed. She was unable to take Trikafta because her body rejected it. She recently shared with all of us that doctors worked to modify the treatment to make it compatible for her. Kate began taking the modified treatment and almost immediately felt improvements in her health. I’d like to share with you Kate’s immense appreciation for the continued support for CF research.
So why are we still hiking?
• Life expectancy for CF patients has vastly improved to mid-40’s but we know we can further improve this.
• CF modulators have been life changing for so many yet there are countless individuals, many of them friends, who do not yet have a suitable modulator for their CF mutation.
• Many CF patients continue to battle lung infections resulting in permanent lung damage. Research on how best to prevent/fight infections is critical.
• And most importantly there is still NO cure for CF, only treatments.
The Posse and I have been training almost every weekend since February in preparation for the big day. Next Saturday we’ll be rising at 2:30AM, hitting the trail before 4AM with headlamps, hiking 10-12 hours, 20+ miles, 5k+ feet of elevation in one day - hoping to complete our 10th CFF Xtreme hike!
Thank you for all of the encouragement and support over the last few months during our training. If you are in a position to support our hike, please know that all donations, ANY size, will make an impact. You can donate by:
1) Following my link: http://fightcf.cff.org/goto/PsPosseLindaD
2) Mailing your check, payable to the Cystic Fibrosis Foundation, to:
Linda Douglas, 45 Sacramento Street, Unit 1, Cambridge, MA 02138
If you happen to think of us next Saturday, please send positive thoughts our way for some dry, cool weather and a safe day in the hills of the Berkshires.
Peace, love and gratitude,
Linda & the Posse xxoo
Diane, Jim, Patrick, Liz, Meredith & Mary