Walk with our team to Cure Cystic Fibrosis

TheRareDuo

Fundraising for Philadelphia Great Strides 2026

TheRareDuo

We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.

While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.

TheRareDuo are siblings with Cystic Fibrosis (CF), who were born 2 years apart. Cystic Fibrosis is an inherited life-threatening disorder that damages the lungs and digestive system.

Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways.

Symptoms vary and can include cough, repeated lung infections, inability to gain weight, and fatty stools.

Treatments may ease symptoms and reduce complications. Newborn screening helps with early diagnosis.

Joshua was diagnosed with CF by newborn screening results. He has one deltaF508 and three rare (cf) genes. When I say “rare genes” they are cf genes that might get read over because they are not common in the cf data,or they are newly symptomatic genes. Only 1/3 rare genes are active. Joshua is a very active young boy who loves theatre and sports. His daily routine involves breathing treatments,vitamins, enzymes supplements, vest,and a lot of physical therapy to break up mucus. His younger sister Gabriella, also has CF. Gabriella was not diagnosed at new born screening. Mom even got tested during pregnancy and blood results showed no sign of cf. Gabriella started showing small symptoms a few months before One years old. After so many test, we found that they only tested her for the two active genes that her brother has. She was 2 years old before we were told Gabriella does not have the main CF gene(deltaF508) but 4 rare CF genes.After 7 years of testing. Our original clinic has hit down and we now receive care at a different CF Clinc that is telling me that information was wrong and she has one gene of deltaf508 . We are so lost with that information since we been fighting for so long to see why she is having these symptoms! Her symptoms have grown very slowly over the years and is still currently being tested to see what genes are making her symptomatic. Gabriella loves gymnastics and singing but her energy level runs very low. Her daily routine consist of breathing treatments and physical therapy activities. We are grateful that our symptoms are more mild than other cases may be. We pray for those who are fighting and for those who lost the fight. 💛Join our team today! 💜TheRareDuo will continue to spread awareness for CF, Build Hope and Pray that one day CF stands for CURE FOUND!

Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?

MAR
9

TheRareDuo are siblings with Cystic Fibrosis (CF), who were born 2 years apart. Cystic Fibrosis is an inherited life-threatening disorder that damages the lungs and digestive system. Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways. Symptoms vary and can include cough, repeated lung infections, inability to gain weight, and fatty stools. Treatments may ease symptoms and reduce complications. Newborn screening helps with early diagnosis. Joshua was diagnosed with CF by newborn screening results. He has one deltaF508 and three rare (cf) genes. When I say “rare genes” they are cf genes that might get read over because they are not common in the cf data,or they are newly symptomatic genes. Only 1/3 rare genes are active. Joshua is a very active young boy who loves theatre and sports. His daily routine involves breathing treatments,vitamins, enzymes supplements, vest,and a lot of physical therapy to break up mucus. His younger sister Gabriella, also has CF. Gabriella was not diagnosed at new born screening. Mom even got tested during pregnancy and blood results showed no sign of cf. Gabriella started showing small symptoms a few months before One years old. After so many test, we found that they only tested her for the two active genes that her brother has. She was 2 years old before we were told Gabriella does not have the main CF gene(deltaF508) but 4 rare CF genes.After 7 years of testing. Our original clinic has hit down and we now receive care at a different CF Clinc that is telling me that information was wrong and she has one gene of deltaf508 . We are so lost with that information since we been fighting for so long to see why she is having these symptoms! Her symptoms have grown very slowly over the years and is still currently being tested to see what genes are making her symptomatic. Gabriella loves gymnastics and singing but her energy level runs very low. Her daily routine consist of breathing treatments and physical therapy activities. We are grateful that our symptoms are more mild than other cases may be. We pray for those who are fighting and for those who lost the fight. 💛Join our team today! 💜TheRareDuo will continue to spread awareness for CF, Build Hope and Pray that one day CF stands for CURE FOUND!