Dear Friends and Family,
I can't believe that Brewer's Ball 2020 is just around the corner on March 28th! This year, I’m excited to announce a new location at the hottest new venue- The Anthem DC! The ball has evolved for sure in the last 15 years since inception and so glad to be a part of it.
So why am I involved?
My identical twin brother in laws Chris & Charlie and sister in law Sara were all born with the genetic disease that makes breathing on a daily basis a struggle. My late husband, Jay's main goal in life was to see a cure and have his younger siblings life a long normal life. Unfortunately this year marks 13 years since Jay's passing and 10 years since our beautiful 28 year old sister, Sara, lost her battle with CF. Fast forward to now, the Cystic Fibrosis Foundation maintains a robust pipeline of therapies that target CF from every angle, including the root cause of the disease. Nearly every CF drug available today was made possible because of the CF Foundation's support, funded by events like the Brewer's Ball.
2019 was an exciting year for the foundation, as many patients were introduced to Trikafta through the FDA approval. This treatment has shown early signs of lung improvement, stamina, and overall health. The funding and research behind the Trikafta treatment is directly related to the money that we have raised from events like this.
While Triktafa has shown massive improvements for those fortunate to be able to get it, there are still a significant number of genetic mutations of the disease that it doesn't treat. It remains the mission of our family to continue to help the Foundation until a cure is found. The Foundation continues to invest hundreds of millions of dollars to help discover and develop breakthrough CF therapies that have improved the quality of life and life expectancy for people with the disease.
My son James never for the opportunity to play hours of board games, card games, movie marathons or Frazier style debates with his dad and his Aunt Sara (aka Aunt Q). He was not yet 2 years old when Sara passed and only sees her in pictures since his can’t recall our trip to Hawaii or Aunt Q playing or cuddling him at a young age. He has tokens of his dad and Aunt Q all around his room and as James continues to grow, he asks about what they were like. I can’t imagine how hard it is sometimes for James inside his mind and understanding all this loss at such a young age and pray for a cure so Uncle Chris & Uncle Charlie can be here to share family stories, rituals, see him graduate high school, college, get married, have kids...they need to be here for Jay and Sara.
I hope to see you at Brewer’s Ball, and if you aren’t able to make it please consider making a tax deductible donation! Over 90 cents of every dollar donated goes directly towards the funding of a cure—the highest percentage of ANY health organization in the country!
Thanks in advance for your support,