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Riley's Story
On January 28th 2024 our beautiful baby girl Riley Rose was welcomed into the world. It wasn't until shortly after we were told Riley has been diagnosed with Cystic Fibrosis.
For those that don't know what Cystic Fibrosis is, CF is a rare, progressive genetic disease that damages the lungs, pancreas, and other organs. Riley's Mother is a known carrier of this gene, but it wasn't until the required NYS newborn bloodwork screening that showed her Dad was a carrier of a very rare form of the CF gene.
We are in great hands at the Stony Brook Children's Hospital, thier staff and team have been nothing but informative and helpful throughout the entire process. As there is no cure for CF, they ensured us that Riley will be able to live a relatively normal life with new medicines that have come out. We are nothing but optimistic with this news.
Riley has been a strong, happy baby through all her testing and has not been showing any complications so far.
We are joining to the Great Strides/Cystic Fibrosis community in hopes to help fundraise and find a cure to this disease. Please help and donate today to find a cure for tomorrow.
Great Strides Story
There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF.
Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.
The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.
Your support makes a difference.
By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.