It's that time of year again! The days are getting longer, the snow has melted and Edison will be 6 one day before this years Great Strides walk around Bde Maka Ska (formerly Lake Calhoun) on May 4th. Six years sure does go by in a blink......
We are happy to report that Edison has had another great year. Kindergarten is a lot to bite off for a little dude but he is absolutely living the dream. Thankfully, thanks to the great work of the foundation, the amazing drug Orkambi was made available to him 3 weeks before he started school. Orkambi, when taken in conjunction with his other treatments has made such a difference, it is a game changing medicine. Largely because of efforts that have been driven by the Cystic Fibrosis Foundation, Edison has navigated his first year of public school with ease. To date, he has had zero missed days due to illness. He is knocking this thing, CF, out of the park daily and the sky is the limit for him. There is little doubt he would be where he is without the finite, detail oriented, work of the Cystic Fibrosis Foundation.
We hope you will join us this year as we continue this fight........
With all the positive there is still work to be done and we all need to move forward with continued vigilance as the next stage of treatments are introduced. A cure is a realistic goal. No matter what, Edison will most likely graduate from high school, college, have a family and a career of his own and it is donors like you that have helped make this possible. The CF foundation gets ZERO federal funding......
Whether you like to send positive vibes, show up to take a lap around the lake, or donate your hard earned money - we appreciate it all - we ask you again for your support. We continue to be so thankful for our friends and family.
Event Home: Minneapolis 2019 Date: 5/4/2019 Check-in: 9:00 AM Event: 10:00 Distance: 3 Miles Chapter: Minnesota Event Location: Thomas Beach Print Event Details:http://maps.google.com/?q=Thomas Beach,,MN
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.