Welcome to Melissa Weiner's Page
Melissa Weiner
Melissa Weiner
Welcome to my fundraising page! My name is Melissa Weiner and I was diagnosed with CF at just a few months old. When I was diagnosed in 1997, the life expectancy for those with CF was just 18 years old. Even though CF was mostly thought of as a respiratory disease then, I was diagnosed because I was “failure to thrive” – instead of growing after birth I actually lost weight. I was just 6 pounds at 3 months old. My diagnosis obviously shook my family, and truly flipped our world upside down, because CF is a genetic disease – and so my parents had my 2-year-old brother tested and low and behold, he had CF too. In the blink of an eye, our family went from a “normal” household to a household with not one, but two chronically ill children. It was at this time that my amazing parents began their fundraising efforts, and they haven’t slowed down since!
As young kids, hours of treatments and handfuls of pills were a normal thing for me and my brother, and with proper CF care, we both thrived and generally stayed healthy. Flash forward to 2012. My brother is a junior in high school, one of the fastest rowers on the Madison Crew Team. Per the little sister handbook, I had to follow him into his sport. I was a 5-foot-tall freshman among giants, but I didn’t let that stop me from loving the sport and enjoying time with my teammates. The one thing that I didn’t do was tell anyone about having CF. I didn’t want anyone to see me as “weak” or to feel like I was using my illness as an excuse for running more slowly or missing practices.
So, when my mom pitched an idea for a fundraiser called Weiner Roast, I realized that my secret would be out. To my surprise, our team really showed up in full force to support us! That first year, there were hundreds of hot dogs cooked and eaten by my teammates, tables overflowing with homemade desserts made by our friends, a DJ who donated his time, and a huge silent auction filled with items donated by local businesses -- and my parents had raised over $50,000 for CF research. After many years of this fundraiser, I finally realized that nobody in my life saw CF as a weakness in me, but rather a show of great resilience and strength.
Now it’s November 2016. I’m a sophomore at my dream college, I’m running fundraising for the rowing club, I’d been elected to a position in my sorority and just started my campus job as a tour guide. Managing my CF while being away at school had been a breeze. Things literally could not be going better. That’s the tricky thing with CF. It can turn on a dime, and you’re healthy until you’re not.
It was December 2016 when it started. Not being able to keep food down, debilitating stomach pain, and fevers overtook my final weeks of fall semester. I visited the ER in the community hospital near school and left without a diagnosis. I toughed it out to get through finals but by the time I came home for winter break, I had lost almost 40 pounds and was too weak to return to school. As we worked to solve the mystery, I lost count of the number of ER visits and out of town hospital trips we made to CF clinics, GI doctors, infectious disease specialists, allergists, and others. No one could figure out what was making me so sick, and even my own doctors didn’t think it was connected to CF. It was finally four months later that the Georgetown Hospital Emergency Room solved the mystery. I was in acute liver failure, complete with cirrhosis and fluid buildup. So there I was, listed for liver transplant, and diagnosed with CF liver disease at the age of 20. To make matters worse, liver disease was not common or well understood by the CF community, and patients with cirrhosis tend to be older men with multiple health problems. It was very scary and hard for me to get my voice heard as a young female patient.
The thing about CF that still perplexes me, is how differently it can manifest in each person, even in siblings. For months I thought “how can I be walking around with all these liver issues, when my brother has problems that are so different?” But this is precisely why the money the Foundation puts toward research is so important. While the CF Foundation has made incredible strides in understanding the underlying cause of the disease – a faulty CFTR protein – there are still many unknowns.
Following my semester out of school, after months of recovery, I made the choice to get back to campus. It was a long road back to health, but I graduated, still participating in all my extracurriculars, just one semester late in December 2019. The groundbreaking CF drug Trikafta had just been approved, and my brother and I had one of the CF mutations Trikafta was designed to fix. He started taking it and getting amazing results. But new drugs are not tested or approved for people with cirrhosis, so it wasn’t initially recommended for me. But as my GI issues continued to be a major issue, and ultimately affecting my lung function, eventually my doctors started me on it with lots of monitoring of my liver function. I had high hopes Trikafta would fix all of my issues, but my experience with the drug has not been as miraculous as it has been for others. I have struggled with persistent lung infections, a chronic cough and CF-related GI issues even while on this miracle drug. It definitely isn’t a cure for me! And of course, there are still patients with CF who are not eligible for Trikafta because they don’t have a mutation that it targets.
I am a fighter, but I wish I could just relax and not have to manage a complex medical regimen just to stay healthy. I recently traveled overseas, and I literally brought an entire suitcase of respiratory and GI medication and nebulizer machines with me. I had to run through the Frankfurt airport to catch a tight connection carrying it, and by the time I reached my gate I was unable to catch my breath. I can’t take a day off from having CF. None of us can. So please think of me when you think about CF research because it is important to donate so the CF Foundation can fund research for new medications and treatments for patients like me with liver and GI disease, other niche conditions, and those who can’t take modulators. We are not done yet and this beautiful and diverse community needs your help. The CF Foundation’s newest initiatives into genetic therapies give me hope that a true cure for all patients is on the horizon, but it is going to cost millions to get there.
Today I am here to tell you that you can each make a difference. Whether it’s $5 or $500, each dollar counts towards the amazing progress that is going on. Thank you all so much for listening to my story, I hope it has inspired you to give money, learn more about CF, or even volunteer with the Foundation! I’m going to turn it over to Jack for the next part of our program!
To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!
As young kids, hours of treatments and handfuls of pills were a normal thing for me and my brother, and with proper CF care, we both thrived and generally stayed healthy. Flash forward to 2012. My brother is a junior in high school, one of the fastest rowers on the Madison Crew Team. Per the little sister handbook, I had to follow him into his sport. I was a 5-foot-tall freshman among giants, but I didn’t let that stop me from loving the sport and enjoying time with my teammates. The one thing that I didn’t do was tell anyone about having CF. I didn’t want anyone to see me as “weak” or to feel like I was using my illness as an excuse for running more slowly or missing practices.
So, when my mom pitched an idea for a fundraiser called Weiner Roast, I realized that my secret would be out. To my surprise, our team really showed up in full force to support us! That first year, there were hundreds of hot dogs cooked and eaten by my teammates, tables overflowing with homemade desserts made by our friends, a DJ who donated his time, and a huge silent auction filled with items donated by local businesses -- and my parents had raised over $50,000 for CF research. After many years of this fundraiser, I finally realized that nobody in my life saw CF as a weakness in me, but rather a show of great resilience and strength.
Now it’s November 2016. I’m a sophomore at my dream college, I’m running fundraising for the rowing club, I’d been elected to a position in my sorority and just started my campus job as a tour guide. Managing my CF while being away at school had been a breeze. Things literally could not be going better. That’s the tricky thing with CF. It can turn on a dime, and you’re healthy until you’re not.
It was December 2016 when it started. Not being able to keep food down, debilitating stomach pain, and fevers overtook my final weeks of fall semester. I visited the ER in the community hospital near school and left without a diagnosis. I toughed it out to get through finals but by the time I came home for winter break, I had lost almost 40 pounds and was too weak to return to school. As we worked to solve the mystery, I lost count of the number of ER visits and out of town hospital trips we made to CF clinics, GI doctors, infectious disease specialists, allergists, and others. No one could figure out what was making me so sick, and even my own doctors didn’t think it was connected to CF. It was finally four months later that the Georgetown Hospital Emergency Room solved the mystery. I was in acute liver failure, complete with cirrhosis and fluid buildup. So there I was, listed for liver transplant, and diagnosed with CF liver disease at the age of 20. To make matters worse, liver disease was not common or well understood by the CF community, and patients with cirrhosis tend to be older men with multiple health problems. It was very scary and hard for me to get my voice heard as a young female patient.
The thing about CF that still perplexes me, is how differently it can manifest in each person, even in siblings. For months I thought “how can I be walking around with all these liver issues, when my brother has problems that are so different?” But this is precisely why the money the Foundation puts toward research is so important. While the CF Foundation has made incredible strides in understanding the underlying cause of the disease – a faulty CFTR protein – there are still many unknowns.
Following my semester out of school, after months of recovery, I made the choice to get back to campus. It was a long road back to health, but I graduated, still participating in all my extracurriculars, just one semester late in December 2019. The groundbreaking CF drug Trikafta had just been approved, and my brother and I had one of the CF mutations Trikafta was designed to fix. He started taking it and getting amazing results. But new drugs are not tested or approved for people with cirrhosis, so it wasn’t initially recommended for me. But as my GI issues continued to be a major issue, and ultimately affecting my lung function, eventually my doctors started me on it with lots of monitoring of my liver function. I had high hopes Trikafta would fix all of my issues, but my experience with the drug has not been as miraculous as it has been for others. I have struggled with persistent lung infections, a chronic cough and CF-related GI issues even while on this miracle drug. It definitely isn’t a cure for me! And of course, there are still patients with CF who are not eligible for Trikafta because they don’t have a mutation that it targets.
I am a fighter, but I wish I could just relax and not have to manage a complex medical regimen just to stay healthy. I recently traveled overseas, and I literally brought an entire suitcase of respiratory and GI medication and nebulizer machines with me. I had to run through the Frankfurt airport to catch a tight connection carrying it, and by the time I reached my gate I was unable to catch my breath. I can’t take a day off from having CF. None of us can. So please think of me when you think about CF research because it is important to donate so the CF Foundation can fund research for new medications and treatments for patients like me with liver and GI disease, other niche conditions, and those who can’t take modulators. We are not done yet and this beautiful and diverse community needs your help. The CF Foundation’s newest initiatives into genetic therapies give me hope that a true cure for all patients is on the horizon, but it is going to cost millions to get there.
Today I am here to tell you that you can each make a difference. Whether it’s $5 or $500, each dollar counts towards the amazing progress that is going on. Thank you all so much for listening to my story, I hope it has inspired you to give money, learn more about CF, or even volunteer with the Foundation! I’m going to turn it over to Jack for the next part of our program!
To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!
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