CURE CF 2025
Ethan, Jeff & Sarah Vander Molen
Fundraising for Paramus Great Strides
Ethan, Jeff & Sarah Vander Molen
ETHAN'S TEAM
GREAT STRIDES 2025, Sunday May 18
11am Van Saun Park, Paramus
& CORNHOLE FOR A CURE 2025, Saturday May 17
to sign up for cornhole: https://passion.cff.org/cornholeforacure
When I was younger, it was difficult to share my experiences of growing up with Cystic Fibrosis. One of the things I did to help with fundraising and educating others about CF was to make videos that we put on YouTube. For those who have followed my story, you may remember some of these. Recently, I rewatched my younger self and somewhat relived those experiences. Instantly, I could recall distinct memories of my times in the hospital, sleepless nights, and the constant need to infuse intravenous antibiotics. Amazingly, though, these times are becoming more like distant memories. As cringy as it is to watch myself back then, I’m glad I went through the effort to document these times of my life. There is a reality of the difficulties of living with this disease, but spending time in the hospital is something I haven’t done in a while. I am grateful to be currently doing very well.
I think about those families with newly diagnosed children with Cystic Fibrosis. I’m hopeful that my younger years are not the same story for a child growing up now with CF. I’ve previously shared that one of my encouragements in treatment is the gene modulator drug I take, which, along with my daily breathing treatments and maintenance medications, has helped me tremendously. Due to the investments in research and constant pursuit of fundraising for a cure by the CF Foundation, the quality of life for both adults and children living with CF has benefited. It is estimated that 94% of the CF population is now eligible for a gene modulator. This is causing fewer hospital visits, clearer breathing, healthier living, and the overall experience of a more “normal” lifestyle.
The progression of longer lives has put a shift on the CF Foundation to create more resources for adults. I’m now 26 years old. What does this mean? You guessed it; I now need my own health insurance. Finding coverage for someone living with a chronic disease is not the most straightforward task. I benefitted from a personal case manager associated with the CFF Compass program that helped me find the best possible health insurance plan for my needs, including coverage for the specific medications I take, my CF doctors, and for overall affordability. I was so relieved to have this help.
The CF Foundation has given me a sense of reassurance in knowing that I’m not alone in facing the challenges of living with CF. This reassurance reaches back to 1955 when a group of concerned parents united to form the CF Foundation at a time when children diagnosed with CF were not expected to live long enough to attend elementary school. It continues through my own life, where your unwavering support and prayers have carried me through surgeries, hospital stays, tough times filled with encouragement, and joyful moments of celebration. This extends further through our fundraising efforts for the CF Foundation, including your generous donations, participating in Great Strides walks, and attending Cornhole for a Cure. Above all, it reflects God’s goodness in my journey living with Cystic Fibrosis.
Thank you for your donations as we continue to have hope for a cure!
Ethan Vander Molen
GREAT STRIDES 2025, Sunday May 18
11am Van Saun Park, Paramus
& CORNHOLE FOR A CURE 2025, Saturday May 17
to sign up for cornhole: https://passion.cff.org/cornholeforacure
When I was younger, it was difficult to share my experiences of growing up with Cystic Fibrosis. One of the things I did to help with fundraising and educating others about CF was to make videos that we put on YouTube. For those who have followed my story, you may remember some of these. Recently, I rewatched my younger self and somewhat relived those experiences. Instantly, I could recall distinct memories of my times in the hospital, sleepless nights, and the constant need to infuse intravenous antibiotics. Amazingly, though, these times are becoming more like distant memories. As cringy as it is to watch myself back then, I’m glad I went through the effort to document these times of my life. There is a reality of the difficulties of living with this disease, but spending time in the hospital is something I haven’t done in a while. I am grateful to be currently doing very well.
I think about those families with newly diagnosed children with Cystic Fibrosis. I’m hopeful that my younger years are not the same story for a child growing up now with CF. I’ve previously shared that one of my encouragements in treatment is the gene modulator drug I take, which, along with my daily breathing treatments and maintenance medications, has helped me tremendously. Due to the investments in research and constant pursuit of fundraising for a cure by the CF Foundation, the quality of life for both adults and children living with CF has benefited. It is estimated that 94% of the CF population is now eligible for a gene modulator. This is causing fewer hospital visits, clearer breathing, healthier living, and the overall experience of a more “normal” lifestyle.
The progression of longer lives has put a shift on the CF Foundation to create more resources for adults. I’m now 26 years old. What does this mean? You guessed it; I now need my own health insurance. Finding coverage for someone living with a chronic disease is not the most straightforward task. I benefitted from a personal case manager associated with the CFF Compass program that helped me find the best possible health insurance plan for my needs, including coverage for the specific medications I take, my CF doctors, and for overall affordability. I was so relieved to have this help.
The CF Foundation has given me a sense of reassurance in knowing that I’m not alone in facing the challenges of living with CF. This reassurance reaches back to 1955 when a group of concerned parents united to form the CF Foundation at a time when children diagnosed with CF were not expected to live long enough to attend elementary school. It continues through my own life, where your unwavering support and prayers have carried me through surgeries, hospital stays, tough times filled with encouragement, and joyful moments of celebration. This extends further through our fundraising efforts for the CF Foundation, including your generous donations, participating in Great Strides walks, and attending Cornhole for a Cure. Above all, it reflects God’s goodness in my journey living with Cystic Fibrosis.
Thank you for your donations as we continue to have hope for a cure!
Ethan Vander Molen
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