As many of you know, last year we welcomed Alice into our family and were informed shortly after her birth that she was diagnosed with Cystic Fibrosis. Last year we decided to host a team at Great Strides to help bring family and friends together, raise awareness, and walk to raise funds for a cure. In a few short weeks, we were one of the top teams in the state and raised almost $24,000(!!) to fund research through the Cystic Fibrosis Foundation.
In the past year, we have truly grown as a family. We have spent 371 hours doing manual chest therapy, equal to about 15 days of our lives (mainly Allie's life if we are all being honest here), made 23 trips to the hospital for appointments ranging 3 to 8 hours, at one point averaged over 500 pills per month, and have given thousands of hand washing reminders. We have also been very fortunate, Alice was able to begin participating in Vertex's VX-126 study which allowed her to receive a drug that will likely extend her life expectancy beyond what was thought possible just a few short years ago. At the time of her first dose, we were told it was quite possible that she was the world's youngest recipient of the drug. Because this is an FDA trial, we are blind to the results but are hopeful for what this means for Alice's future.
Date: May 19th, 2019 Location: O'Donnell Park (910 E. Michigan St, Milwaukee WI 53202) Time: 10:30 am meet, the walk is 11 am. Noodles lunch will be served after Kid Friendly / Nice Dog-Friendly Length: 5k
Post Walk Details: Similar to last year we will be hosting a Thank You reception at the Westin (550 N. Van Buren, Milwaukee WI 53202) immediately following the walk. The hotel is about 2 blocks from the finish line of the walk. We will have light appetizers, cash bar, and complimentary award-winning beer provided by Karben4 (thank you!)
We appreciate you joining our team, the support you have shown to our family over the past year, and most importantly, we appreciate you helping bring us closer to finding a cure for CF. See you May 19th!!!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.