.png){kind=logo}
Make a Year-End Gift to the Cystic Fibrosis Foundation
Danny Trapp
Danny Trapp
Dear Family and Friends,
As I sit down to write this, Simmons is in the hospital with a collapsed lung, it actually collapsed twice. This was due to a biopsy that went a little wrong, but the doctors needed to get a sample of a bacteria that none of the usual medications were eliminating. Last month Catherine, who lives in Arlington VA, had to be referred to the National Institutes of Health because of a similar issue. A specific lung infection that she has been dealing with for the past couple of years has not responded to the usual treatment. All this to say…we are feeling something of a sense of urgency as we near the end of 2025.
Simmons and Catherine are 35 and 33 years old, respectively. When Simmons was diagnosed in 1992 the median life expectancy for someone with cystic fibrosis was 19. The incredible advances in medicine and technology have now increased that life expectancy into the 60’s. But for us, there is a catch. This huge increase in life expectancy has been greatly fueled in the last ten years by the miracle CF modulator Trikafka. This amazing therapy provides vast improvement in symptoms for over 90% of the CF population. As you may remember from past letters, Simmons and Catherine have a pair of rare mutations and are in the 10% that still have no miracle drug. And this disease, which is progressive in nature, is starting to impact them in ways and frequencies that we have not seen before.
Now for the good news! There is an incredible amount of research, money and technology being targeted to four of the rare mutations, including the one our girls have. In September, Scottie and I were fortunate enough to tour the Cystic Fibrosis Foundation Therapeutics Lab in Lexington MA. We actually met the scientists who are focusing on our daughters’ mutation, and they told us all about the challenges they are facing. They are almost certain gene therapy will be the solution for Simmons and Catherine, but the lungs are tricky because they’re structured to keep foreign things out, so the delivery system is the main problem that needs to be solved now. We were very encouraged, but we also know this kind of science is very expensive. That is where we hope you come in.
We need your help to continue to fund the ground-breaking research that will lead to a cure for our daughters. We are eternally thankful for your continued support through events and campaigns like this year-end letter. We cannot continue without you. You have generously supported us in the past not only with money but with prayers and support. Please join us in 2025 to help make CF stand for Cure Found!
Gratefully,
Danny Trapp
As I sit down to write this, Simmons is in the hospital with a collapsed lung, it actually collapsed twice. This was due to a biopsy that went a little wrong, but the doctors needed to get a sample of a bacteria that none of the usual medications were eliminating. Last month Catherine, who lives in Arlington VA, had to be referred to the National Institutes of Health because of a similar issue. A specific lung infection that she has been dealing with for the past couple of years has not responded to the usual treatment. All this to say…we are feeling something of a sense of urgency as we near the end of 2025.
Simmons and Catherine are 35 and 33 years old, respectively. When Simmons was diagnosed in 1992 the median life expectancy for someone with cystic fibrosis was 19. The incredible advances in medicine and technology have now increased that life expectancy into the 60’s. But for us, there is a catch. This huge increase in life expectancy has been greatly fueled in the last ten years by the miracle CF modulator Trikafka. This amazing therapy provides vast improvement in symptoms for over 90% of the CF population. As you may remember from past letters, Simmons and Catherine have a pair of rare mutations and are in the 10% that still have no miracle drug. And this disease, which is progressive in nature, is starting to impact them in ways and frequencies that we have not seen before.
Now for the good news! There is an incredible amount of research, money and technology being targeted to four of the rare mutations, including the one our girls have. In September, Scottie and I were fortunate enough to tour the Cystic Fibrosis Foundation Therapeutics Lab in Lexington MA. We actually met the scientists who are focusing on our daughters’ mutation, and they told us all about the challenges they are facing. They are almost certain gene therapy will be the solution for Simmons and Catherine, but the lungs are tricky because they’re structured to keep foreign things out, so the delivery system is the main problem that needs to be solved now. We were very encouraged, but we also know this kind of science is very expensive. That is where we hope you come in.
We need your help to continue to fund the ground-breaking research that will lead to a cure for our daughters. We are eternally thankful for your continued support through events and campaigns like this year-end letter. We cannot continue without you. You have generously supported us in the past not only with money but with prayers and support. Please join us in 2025 to help make CF stand for Cure Found!
Gratefully,
Danny Trapp
Comments