Hi Friends! Sharing this here in case you don’t follow me on social media: Riley has been so excited for Great Strides and I wanted something special for her this year. Cue my amazing and talented friend dreaming up her very own team logo! How amazing for her to see all the people who love her wearing her own logo on walk day?! If you plan on joining us on April 27th, please sign up ASAP (scroll all the way down and click “Join Our Team”) so I can do my very best to make sure everyone has a shirt for walk day! You can sign up now and donate later as well - no donation is required for you to sign up. If you’re bringing kiddos, sign them up as well! It will help me and the foundation to have a full headcount. I found a print shop to order through and I need to know shirt sizes by April 1st!
Riley’s ROAR!
✨APRIL 27, 2025✨
Riley’s journey with CF has been anything but ordinary. Over the years her diagnosis has changed from Cystic Fibrosis to CRMS to CFTR-Related Disorder. Despite her questionable genetics and intermediate sweat chloride tests, she was never asymptomatic. After hundreds of appointments, phone calls, blood draws, x-rays, PFTs, medication changes, etc., her mutations were approved to be treated by Kalydeco.
Words cannot even begin to express how utterly life changing Kalydeco has been…
The toddler who spent hours a day laying on the couch in pain has transformed into a bubbly, outgoing girl. The toddler who couldn’t walk for more than 20 minutes without needing to rest has transformed into a strong dancer and gymnast.
The CF Foundation has made incredible progress towards finding a cure for this disease. However, there is still so much work to do. Many people living with CF cannot currently benefit from drugs like Kalydeco and Trikafta. Their fight is our fight. Until every person living with CF benefits from the medications available…until CF stands for cure found…we stride, we donate, we advocate.
Please join us for Great Strides 2025! Help us show Riley how loved and supported she is, and may she never walk this journey alone.
Riley’s journey with CF has been anything but ordinary. Over the years her diagnosis has changed from Cystic Fibrosis to CRMS to CFTR-Related Disorder. Despite her questionable genetics and intermediate sweat chloride tests, she was never asymptomatic. After hundreds of appointments, phone calls, blood draws, x-rays, PFTs, medication changes, etc., her mutations were approved to be treated by Kalydeco.
Words cannot even begin to express how utterly life changing Kalydeco has been…
The toddler who spent hours a day laying on the couch in pain has transformed into a bubbly, outgoing girl. The toddler who couldn’t walk for more than 20 minutes without needing to rest has transformed into a strong dancer and gymnast.
The CF Foundation has made incredible progress towards finding a cure for this disease. However, there is still so much work to do. Many people living with CF cannot currently benefit from drugs like Kalydeco and Trikafta. Their fight is our fight. Until every person living with CF benefits from the medications available…until CF stands for cure found…we stride, we donate, we advocate.
Please join us for Great Strides 2025! Help us show Riley how loved and supported she is, and may she never walk this journey alone.
MAR
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MAR
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