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Support the CF Foundation this Holiday Season
Danny Trapp
Danny Trapp
As we rapidly approach the new year, we are thankful for so much. Simmons and Catherine, while certainly navigating challenges, are still pretty healthy into their 30’s. The triplets – Francis, Jacquie and Julia, turned 5 years old! Scottie triumphed over appendix cancer and Danny continues to unsuccessfully try to retire. What hasn’t changed is that our daughters continue to fight cystic fibrosis every day. Simmons is still improving from a disappointing reaction to a clinical trial she was involved in (cheers to her for risking her own health to find a cure!) and Catherine has come down with a nasty little bug called non-tuberculous mycobacteria (NTM) that will have her on some unique medication for the next year or two. Last month the Cystic Fibrosis Foundation asked to interview us for a profile in a national CF publication. It brought back 30-plus year-old memories that we haven’t really talked about in a long time. Here is an excerpt from the resulting article:
It was a Friday evening in the summer of 1992 when Scottie and Danny Trapp began urgently flipping through the yellow pages to find the number for the Cystic Fibrosis Foundation’s Charlotte, NC chapter. They had just learned from their doctor that their 2-year-old daughter, Simmons, had cystic fibrosis and desperately wanted answers. “It was late in the day, but someone picked up,” recalls Danny. “It was just the right thing in the moment – we didn’t need to know all the down sides of CF. The Foundation staff gave us the prospect of better things to come.”. At this time the Trapps were pregnant with their second daughter, Catherine, who they would eventually learn also had CF. Both girls have rare and nonsense mutations and do not benefit from modulator therapies. While this reality has been daunting for Scottie and Danny, they have channeled their fear into action by giving back to the Foundation. “There’s an hourglass that my kids are fighting against,” Scottie reflects, “How can we not support this cause?”
Due to the amazing work of the CF Foundation since it’s beginning in 1955, there are now drugs, treatments and modulator therapies that are providing incredible benefits to about 90% of the CF population. In many cases the results are “cure-like.” But Simmons and Catherine, with their rare gene mutations, are in that 10% that cannot take advantage of these lifesaving advances. So, the journey, and the work, continues. We, and the foundation, are now hyper-focused on this final 10% with about 14 different therapies in the FDA pipeline. But of course, this kind of modern medical magic is incredibly expensive. You, our family and friends, have been so supportive over the years and the results are stunning. But we are in it until it’s done, and we hope you can continue to be there with us as well. Please consider a donation to the CF Foundation this year as we strive to finish this once and for all and get “The Final 10 for the Win!”
We are thankful for you.
With gratitude, Scottie & Danny
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