AMBASSADOR SPOTLIGHT:
Jodi Bahrijczuk Richardson, Jamie Bahrijczuk, Joshua Bahrijczuk

Let us introduce ourselves! We are Jodi Bahrijczuk Richardson (29), Jamie Bahrijczuk (26) and Joshua Bahrijczuk (23). Our parents entered the CF world with the notification at their first sonogram with Jodi that she had a bowel blockage. They were sent to a genetics counsel who determined she had Cystic Fibrosis.

They had never even heard the term Cystic Fibrosis. The information about CF in 1995 was that there was only a 50% chance a child would live pass 18 years old, numerous hospitalizations, not be active or play sports, miss a lot of school, be undersized and have difficulty gaining weight. We are happy to say that none of these were true for us.

Just as each of our personalities are different so is how we have been affected with CF. Jodi's affected her belly more, Joshua his lungs and Jamie unfortunately both belly and lungs. Jamie has been the one with the most hospitalizations and lowest lung function. However, with Trikafta and continued medical research and development, we are doing well today.

We have all earned college degrees! Jodi works in special education, Jamie in hospitality and Joshua in media production. We all lead active lives. So just as we were 28 years ago, we remain hopeful that one day CF will stand for CURE FOUND!

AMBASSADOR SPOTLIGHT:
Laney Siems

I was diagnosed with cystic fibrosis when I was 5 months old. In 2019, I was lucky enough to be a candidate for the groundbreaking drug Trikafta. While this life-changing drug has given me a 9% boost in my lung function, I still take between 25 and 30 pills a day, among other treatments.

I have learned a lot through my battle with CF. Over the years, things certainly got more difficult for me in terms of my disease.

CF and diabetes can be wildly difficult to manage, and the progression of CF has begun to take more of a toll on my body the couple of years before I started taking Trikafta. It had been much more difficult to do simple things like walk up a flight of stairs or get out of bed. I am so thankful for Trikafta which has given me better health, the ability to work out and run again without feeling overly defeated, and some much-needed peace of mind.

Trikafta has allowed me to take control of my own life and live as close to a normal life as possible. I moved to San Diego in May of 2023 and I am absolutely loving it!

Although Trikafta has changed many things for the better, it is still not a cure! I ended up getting sick in November and had to go on IV antibiotics for a Cystic Fibrosis lung infection in December of 2023. After two weeks on the antibiotics, they were not working so I had to be admitted to the hospital for a week. I ended up being on IV antibiotics for 5 weeks before my lung function came back up to baseline. That hospitalization and sickness was a humble reminder that CF is still very much part of my life and something I continue to fight daily. It reminded me that we are still not there yet, and in order to get there, we need your support, donations, and to show up until CF finally stands for CURE FOUND. With your help, we are on our way, but we still need to keep fighting! Let's find a CURE!

AMBASSADOR SPOTLIGHT:
Jordan Magsamen

Hello, my name is Jordan Magsamen and I am 30 years old. I was diagnosed with Cystic Fibrosis when I was 17 months old. I truly never thought I would see the age of 30. When I was diagnosed all those years ago, the life expectancy for someone born with CF was 29 years old. I am grateful and truly so glad I beat those odds. Sometimes I don't even think this is real life and I simply cannot fathom how that is possible. People who have supported me and the CF Foundation for years on end, are WHY that is possible. I am so grateful for Trikafta and all of the advancements in medicine. It has improved my lung health so much. Even though my lungs are the healthiest they have ever been, the rest of my body is struggling. My whole life I was mentally preparing for a lung transplant. In 2024, I started the process of Transplant Evaluation for a Kidney and Liver Transplant. Unfortunately, my Kidney Disease has progressed rapidly and I am now in Stage 5 Kidney Failure. I have been approved for Kidney Transplant as of December 2024. Now, we wait for the Liver Transplant Team to evaluate my case and get approval for both.

It wouldn’t be my life if things were simple, cut and dry. I was told that I am in a tough spot because my liver has not decompensated. Even though I have liver cirrhosis due to CF, my liver has compensated, and my liver labs are not horrible. After speaking with the transplant team, it was discussed that a single deceased donor is my best option. Since I am young it would not be ideal to have two separate donors due to the risk of increased rejection. This is a whole new world to me and my family. You don’t realize how everything is connected to your kidneys. This was a hard pill to swallow considering I was born with a genetic lung disease. Now I must deal with another obstacle of challenges. I will get through this just like I always have. Everyone has always pushed me to be strong and do everything that was needed to survive. I am so happy to say I am livin’ life with my family, puppies and friends! I am one lucky and, also unlucky woman. With today’s research and break throughs in treatments and drugs, I am able to breathe a little bit easier. I like to volunteer for the CF Foundation and participate in great events, just like Feastival to raise funds for more research. Being a CF advocate, raising awareness and funds, to hopefully change my life and that of others with CF, is important to me. We still have a lot of work to do, but we are well on our way to life-changing treatments and hopefully, a cure! Please join me on this journey and make a difference. We will not stop until CF stands for Cure Found!

AMBASSADOR SPOTLIGHT:
Colleen Crowley

Hi everyone! My name is Colleen, I am 28 years old and was diagnosed with CF when I was just two weeks old. I am so excited to celebrate with my friends and family at this year’s Feastival event, but even more excited to stand by the sides of all the other amazing CF ambassadors.

When I was born, the life expectancy for someone with CF was less than 30 years old. Despite my fairly good health throughout my childhood and young adulthood, I think it’s fair to say that number was always creeping in the back of mine and my family’s heads. Each year that I get closer to that milestone is filled with bittersweet feelings. I have now been on Trikafta for 5 years and as the time passes, those bittersweet feelings are mixed with more confidence for a long and healthy future.

I want to thank everyone for visiting this page, attending different CF events, and donating year after year to fight against this brutal disease. I wouldn’t have made it this far without my support system and I will forever be grateful for everyone who has stood by my side all these years. Your donations, prayers, and raising awareness make a huge difference, but there is still so much work to be done! Trikafta and other genetic modulators are not a cure, and there are still so many CFers who are unable to take these lifesaving medications. I will not stop fighting for every person with CF until a cure is found, and I hope you all will join me. Can’t wait to see everyone at this year’s Feastival!

AMBASSADOR SPOTLIGHT:
Caitlin Marucci

My name is Catie Marucci, I have suffered with Cystic Fibrosis my entire life. I was born on September 14, 1991, and was diagnosed on April 1, 1992. Unfortunately, it was not an April Fool's joke. My parents were told by doctors that I most likely would not live past my 13th birthday. That was the average life span of someone born with CF at that time. Since I was born, I’ve been in and out of the hospital, had too many doctors’ appointments to even count, my lung function was all over the place getting as low as 55%.

However, thanks to the money raised for research for CF through fundraisers like Feastival, I am now 33 years old, a college graduate, working full time, married to the most amazing man, and a mom to a 4-year-old boy, Liam, and a 2-year-old girl, Lucy! I am confident that all of this would not have been possible without access to the medication I am on that was created from the money fundraised from events like this one. I wanted to become an ambassador for CF to spread awareness about this disease and the importance of fundraising for this cause. We will not stop until CF stands for Cure Found!

AMBASSADOR SPOTLIGHT:
Kaite Rose

Katie Rose is a former TV and radio host turned MOM(!!) thanks to Trikafta! She currently lives in her hometown with her fiance Sam, and 18 month old son, Hendrick!

Her wildest dreams came true in the past decade, playing in roles such as Radio host, TV Host and now Mother. And it's all because Trikafta turned her health around at a critical time in her life; allowing her to continue to follow her career path, find love and start her family!

She always thought having kids would be close to out of the question. In 2020, she found her person, Sam, and, ready to start their life together, they were mentally prepared for any path that brought them to parenthood.

Sam has been an immense support in maintaining Katie Rose's health. In October of 2022, he started sending daily reminder texts for her to take her Trikafta. By December they found out they were expecting!

Kaite Rose spent the entire next year taking in every day, every change and every deep breath as a gift. Previous to Trikafta, pregnancy was an extremely dangerous time for mothers with Cystic Fibrosis. With the introduction of Trikfta, pregnancies in mothers with Cystic Fibrosis DOUBLED! Kaite Rose's lung function even IMPROVED during pregnancy! Because of Trikafta, Kaite Rose was thriving! She gave birth to Hendrick James on Aug 17, 2023. She was absolutely certain her son would be an adorable little gremlin! But when she saw his face she couldn't believe just how beautiful her little alien was.

"Is this real life?" Is a constant thought for her. When motherhood is hard, when it's joyful, when it's overwhelming and beautiful, not a moment goes by that she doesn't thank the donors, researchers, doctors, social workers, parents, family and friends of those with Cystic Fibrosis for making today possible.

She hopes to get back on air soon, but for now she is loving every belly laugh, stinky diaper, chunky thigh squeeze and midnight wake ups in her new life!

She is also dedicated to continuing the research development outreach and support for her Cysters and Fibros who are not eligible for Trikfta. We're not done and we won't quit until CF stands for Cure Found!

AMBASSADOR SPOTLIGHT:
Matthew Hamburger

Hello, my name is Matthew Hamburger. I was diagnosed with Cystic Fibrosis at 8 weeks young. I am now 32 years old and am hopeful that we will soon make CF stand for cure found!

I have two nonsense mutations, therefore I am ineligible for any current modulators, such as Trikafta. I have participated in clinical trials in hopes of a modulator for the remaining 10% of patients without one. While at times it can be jarring, I am determined not to let CF defeat me.

Despite living with a debilitating disease, I lead a very fulfilling life. In 2022 I got married to my beautiful bride, Alyssa. Together, we live in the Washington, DC area where I have a full-time job, and Alyssa works as a registered nurse. In my spare time, I enjoy cooking international dishes and cheering on my favorite sport teams, the Ravens, Terps and Orioles.

My wife and I enjoy traveling and experiencing different cultures. Our favorite trip thus far has been Morocco. The CF community has shown much generosity and support, which has helped me reach many milestones. I know that we can finish this fight to find a cure for this deadly illness.

AMBASSADOR SPOTLIGHT:
Theo Johnson

My name is Thelonious (Theo) Johnson and I’m 22. I graduated from Salisbury University in Maryland in December 2023. I am now a first-grade teacher, soccer and basketball coach, and I have cystic fibrosis. I have an amazing support system of family, friends and my CF community.

I was born with a bowel blockage and shortly after diagnosed with CF. While most people my age are weighed down by starting new careers and figuring out how to maneuver adult life, I have the added stress of managing my CF care. This care involves taking numerous medicines daily and physical therapy twice daily. This added responsibility can seem overwhelming at times on top of “normal” life. There is also a constant concern of becoming sick, having a decrease in lung function and having to be hospitalized due to CF related infections and complications, all of which I have experienced.

In December 2019, I was prescribed the drug Trikafta which has helped me to maintain my weight and lung function. While Trikafta has been an amazing game changer for me and many others with CF there is still a long way to go before everyone with CF can be free from the unfortunate realities of this disease. There are still 10 percent of those with CF who do not benefit from Trikafta.

The CF foundation works constantly to create a life without CF not just a dream, but a reality for all.

I ask that you not just help us financially to meet our goals, but to also provide your positive thoughts and a small amount of time to make a huge difference. I ask that you consider sharing my bio on your social media or by calling someone with CF who is sick and, in the hospital, or by volunteering at CF events. Your help has proven to change thousands of lives for the better. As individuals we cannot conquer CF, but as a community we can do anything. Let’s make CF stand for Cure Found.