In 2020, while we were in various states of pandemic precaution, our mom, Joan Brown, was diagnosed with Cystic Fibrosis (CF). She was able to identify her symptoms because of our family's close relationship with the Friedsons and Matt's CF journey since birth -- but when she was diagnosed at age 62, we were all in disbelief. After many tests (and a long hunt to find providers who could interpret rare genetic tests), a nonsense mutation in her CFTR gene was confirmed.
About 10% of people with CF in the US have rare mutations. The Cystic Fibrosis Foundation is aggressively pursuing potential treatments for people with CF who have these "nonsense" and other rare mutations. These patients do not benefit from drugs known as modulators, which correct the malfunctioning cystic fibrosis transmembrane conductance regulator.
We are supporting this cause and fundraising as the Browns. Our three siblings have expanded to six, and, while only one of us is still technically a Brown, together (under all our various last names) we are raising money to further research into medical treatments for Cystic Fibrosis. Our mom is healthy and has good lung function but it takes a lot of hard work, particularly with five young grandchildren around all the time!
Please consider supporting our fundraiser for the Cystic Fibrosis Foundation this year. In addition to the personal impact of CF on Matt and our mom, the CF Foundation is consistently ranked as one of the most efficient and effective charities. Your gift is 100% tax deductible.
Love, Ruth, Gabe, Jeremy, Kara, Leo, and Alana (and the grandkids: Liora, Edia, Mira, Asher, and Kitt)