May has always been an important time in our lives. It’s Cystic Fibrosis Awareness Month and it’s Jake’s birthday. This May is even more special because it’s Jake’s 21st birthday! We felt that a fantastic way to celebrate both of these occasions would be to hold a “birthday fundraiser” in on honor of Jake, while supporting the tireless efforts of the Cystic Fibrosis Foundation that has allowed him to have such quality of life while managing this incurable genetic disease.
So many of you who have been with us from his initial diagnosis of Cystic Fibrosis in 2002 and the formation of JAKE’S TEAM in 2003. Through events like our Nassau County Great Strides Walks to our Halloween and Dance parties, JAKE’S TEAM has raised over $800,000 to support research to find a cure for CF. And today we feel SO close to making CF stand for “Cure Found”!
Cystic fibrosis is a rare, progressive, life-threatening disease, which results in the formation of thick mucus that builds up in the lungs, digestive tract, and other parts of the body. It leads to severe respiratory and digestive problems as well as other complications such as infections and diabetes. Currently there still is no cure and still no funding from the Federal government.
This year had one of the biggest breakthroughs in CF history with the FDA approval of the blockbuster new drug Trikafta, a highly effective therapy which treats the underlying cause of CF - but it is only applicable for 90% of the CF population. Fortunately for us, Jake qualified for and is currently taking Trikafta! However, we need to keep going until there we find such a treatment for the remaining 10% - “until it’s done” is the CF mantra!
As for Jake, he just completed his Junior year at the Florida Institute of Technology where he majors in Applied Mathematics, specializing in Astrophysics. He will be continuing summer classes online. Jake is also in the process of applying to graduate school and we can guarantee he will officially become a Florida resident this year. He’s thriving in his academics and most importantly with his health, even more so thanks to his new medication!
Thank you for reading our update and for all your prayers and support over the years. Be it a donation to JAKE’S TEAM, or a note that you’re thinking about our family, we appreciate it so very much. Have a great summer!
With our sincerest gratitude,
Danielle, Matt, Jake & Max Genova