Mary Guy
Family, friends and longtime faithful supporters,
The Cystic Fibrosis Xtreme Hike for Patrick’s Posse is coming up VERY quickly on Saturday, May 31st. I will again be volunteering and did my virtual hike in the Middlesex Fells with fellow Posse members Linda and Diane. Pic below. I will also be looking to get some trail time on hike day between volunteering moments. The rest of the CF Xtreme Hikers will be back at Mt. Greylock again this year doing the usual grueling hike in an effort to help cure CF!
Why do we keep hiking if some CF warriors like Patrick are doing well on Tricafta, the drug released a few years back that pumped up the life expectancy numbers for 90% of the CF population? Well for two main reasons, the biggest one being the 10% who cannot use the drug and are struggling to win the battle against CF, most of them unsuccessfully. The second reason is Trifcafta is life-extending, NOT a cure. So, we hike on for a CURE for CF and for TREATMENT for all.
Patrick continues to thrive. Here he is with sister Elizabeth who recently ran the Boston Marathon to raise money for CF (she crushed it and finished in under four hours!). Another CF sibling in the Hike Community is heading off to Case Western for an internship in a lab doing research for CF. I thought I’d share some positive vibes coming out of this battle we have yet to win.
Thanks to all of you for your support, love and kindness over the years in helping Patrick and the CF Community. If you have the ability, please click the link to donate. And, through my employer, State Street, I am allowed to put in a matching gift request for money I COLLECT as part of an event like this. That means anything you give that has not already been matched by State Street (like a big part of my grand total already), WILL BE DOUBLED!!!!! Free money for CF.
https://fundraise.cff.org/xtremehikema/Donate/Index/1918729?submit=continue
The Cystic Fibrosis Xtreme Hike for Patrick’s Posse is coming up VERY quickly on Saturday, May 31st. I will again be volunteering and did my virtual hike in the Middlesex Fells with fellow Posse members Linda and Diane. Pic below. I will also be looking to get some trail time on hike day between volunteering moments. The rest of the CF Xtreme Hikers will be back at Mt. Greylock again this year doing the usual grueling hike in an effort to help cure CF!
Why do we keep hiking if some CF warriors like Patrick are doing well on Tricafta, the drug released a few years back that pumped up the life expectancy numbers for 90% of the CF population? Well for two main reasons, the biggest one being the 10% who cannot use the drug and are struggling to win the battle against CF, most of them unsuccessfully. The second reason is Trifcafta is life-extending, NOT a cure. So, we hike on for a CURE for CF and for TREATMENT for all.
Patrick continues to thrive. Here he is with sister Elizabeth who recently ran the Boston Marathon to raise money for CF (she crushed it and finished in under four hours!). Another CF sibling in the Hike Community is heading off to Case Western for an internship in a lab doing research for CF. I thought I’d share some positive vibes coming out of this battle we have yet to win.
Thanks to all of you for your support, love and kindness over the years in helping Patrick and the CF Community. If you have the ability, please click the link to donate. And, through my employer, State Street, I am allowed to put in a matching gift request for money I COLLECT as part of an event like this. That means anything you give that has not already been matched by State Street (like a big part of my grand total already), WILL BE DOUBLED!!!!! Free money for CF.
https://fundraise.cff.org/xtremehikema/Donate/Index/1918729?submit=continue
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