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I ROSE UP for all those without the medication they need

Andrew Sabatino
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I am excited to share that I am participating in ROSE UP on October 24, 2024. ROSE UP, now in its fifth year, is a virtual fundraising event created and led by adults with cystic fibrosis to bring the CF community together to advance the CF Foundation's mission. I'm Rosing Up this year by hosting the Rose Up Games for the 4th year in a row. 

For those of you who don't know my story, I was diagnosed with CF at the age of 3. For most of my childhood I kept my CF quiet and didn't talk about it. That changed in 2015 when I was in my junior year of college. My mother put me in contact with Niloofar, a girl with CF who was just a few years older than me living with CF in Iran. Needless to say, as we talked and got to know each other, we had quite a different experience with CF. This was my first time ever talking to somebody else who had CF and knew what it was like to live with this disease. Six months into connecting with Niloofar, she had become a little slower to respond to messages. She said she had been in and out of the hospital. My mom was working with her family trying to get her the medications she needed and try to get her a visa to be able to travel to the US so she could get the care she needed. Unfortunately, after I hadn't heard from her for a few weeks, my mom emailed me that she had passed away. She had been hospitalized for a CF exacerbation, and had caught an infection from the hospital, unrelated to CF. Less than a year later, Niloofar's mother took her own life, as the grief of losing her only daughter was too much for her to bear. 

If Niloofar had been born into the same situation as me, she would still be here, and I would still have a friend. She was put in a situation where she didn't have the care, treatments, or support she needed to not just survive, but to thrive. From that moment on, I made it my mission to work and advocate for those with CF who don't have the resources they need to fight this disease. 

I was able to become the leader of my CF clinic's Adult Advisory Board in 2019, which in turn facilitated more involvement with the CFF. I was asked to be the Heart of America ambassador for Rose Up's 2nd year in 2021. The following year I was asked to join the Rose Up National Committee. This year I became one of 3 chairs to the entire event. I have been through a lot on my CF journey, but I am just getting started in helping advocate for those who don't have the resources they need. 

My goal is to raise $6,500. So please, if you feel so inclined, hit the donate button on my page and help me to reach my goal. 

Excited to Rose Up with everyone this year,

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$100
raised of $6,500 goal
 

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