The Rare Duo
ROSE UP, is a virtual fundraising event created and led by adults with cystic fibrosis (CF). This inspiring event brings the CF community together to advance the mission of finding a cure and improving the quality of life for everyone living with CF.
Participants are encouraged to choose an activity that is meaningful to them to complete on ROSE UP Day. Whether it's running, walking, painting, baking, head shaving, dancing, or anything else that resonates, there are endless ways to ROSE UP!
This year, our goal is to raise $500! You can help us reach it by donating today and spreading the word to your friends and family.
Recognized globally, the CF Foundation has been a trailblazer in the fight against cystic fibrosis, driving extraordinary medical and scientific progress. Together with the CF community, the Foundation has supported the development of more than a dozen CF treatments-an unprecedented achievement in a short span of time-and helped add decades of life for people with CF.
However, despite these advances, many individuals with CF still do not benefit from existing therapies.
TheRareDuo are siblings with Cystic Fibrosis (CF), who were born 2 years apart. 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, enzymes supplements, 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 found out Gabriella does not have the main CF gene(deltaF508) but 4 rare CF genes. 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!
Whether you donate, raise awareness by sharing your story and tagging #ROSEUPCF on social media, or do both, you are making a powerful difference for people living with CF.
Thank you for your support.
Let's ROSE UP together!
#ROSEUPCF
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