It’s that time again - Steve, Jake, Grace and I are walking with our team, For Jakes Sake, in Great Strides at the Milwaukee Lakefront at O’Donnell Park. Great Strides is the largest Cystic Fibrosis Foundation fundraiser of the year and vital to the critical work they do!!
This is our 15th annual year of walking. With the support of family and friends, we’ve raised over $78,000 for CF research!
Jake is 15 years old and was diagnosed with Cystic Fibrosis at birth. Cystic Fibrosis is a life threatening genetic disease that impacts the respiratory and digestive systems. Today, there is no cure. When Jake was born, the median life expectancy for a person with CF was 37. Today, for people born between 2013 and 2018, the median life expectancy is now 44. This is due to the amazing advances in treatments and therapies, made possible by the donations you raise. As wonderful as this is, it still means that half of all people with Cystic Fibrosis will die before they turn 44.
The mission of the Cystic Fibrosis Foundation is to cure and control CF and to improve the quality of life for those living with CF. They have changed the face of this disease and given life and hope to the families that have been affected.
In Jake’s lifetime, he has been blessed to benefit from the incredible advances in CF treatments, including Pulmozyme, TOBI, and Orkambi. This month, Vertex Pharmaceuticals announced positive results in late stage trials for VX-445, Triple Therapy. Studies are concluding that patients with one OR two copies of D508 mutations (most common in CF community) are experiencing increased lung function. Once approved by the FDA, it will be the first CTFR modulator (core defect) that will benefit the majority of people with CF, with at least one copy of D508. Improved lung function means better ability to move mucous from lungs and airways, avoid infections and the overall result is taking fewer antibiotics and experiencing more healthy days. You made this possible and there is no way it continues without you!
The CF Foundation continues to partner with the most successful biotech and pharmaceutical companies as well as scientists, to create lucrative partnerships where royalties for post-approval therapies are reinvested back into the pipeline. Today, there are over 30 drugs in various stages of testing and approvals that span CTFR Modulation, Mucociliary Clearance, Anti-inflammatory and Anti-infective targets. The money raised is aggressively put to work!
Jake is doing GREAT and it is such a blessing! Jake is in 9th grade now and doing very well. High school has been challenging, but he is working hard and making friends. He joined the KMHS Wrestling team this year and earned his JV letters. Unbelievably, he will be taking drivers ed this summer or fall – Steve and I are both completely blown away at the thought of him driving!! We are going on a Disney cruise in April and have an exciting summer planned – camping, boating and a trip to Colorado in August. Jake recently had sinus surgery, his third since he was born, and he recovered very well. His PFT scores are good and he has been able to stay healthy.
This year, Jake’s cousin Kinson was born and also diagnosed with CF. Some of my favorite memories are with his mother when she was a child. I am grateful that I am able to share our truth with her and her family as they begin this journey.
If you would like to help, please join our team, sponsor a walker or make a donation! Walk details can be found on the website. The link at the bottom of this page will take you there and it will have everything you need. On the left of the page, you will have an option to join our team or make a donation.
Thank you so much for your support! Steve, Carrie, Jake & Grace
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.