AMBASSADOR SPOTLIGHT:
Laney Siems

I was diagnosed with cystic fibrosis when I was 5 months old. Three years ago, 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 have certainly gotten 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 past 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 had started suffering from anxiety and panic attacks a few years ago due to my declining health. I am so thankful for Trikafta which has given me better health, the ability to workout (finished my 71st SolidCore class today) and run again without feeling overly defeated, and some much needed peace of mind.

Although Trikafta has changed many things for the better, it is still not a cure! I hope these new medications will keep me stable until CF does finally stand 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

Hi, my name is Jordan Magsamen and I am 28 years old. I am a dog mom to two beautiful puppies and I live with my boyfriend Chris. I was diagnosed with Cystic Fibrosis when I was 17 months old. I will be 29 this year and that means I'm only 1 year away from 30. I truly never thought I'd see 21, 25 and definitely not 30. I am so grateful for Trikafta. It has improved my lung health so much. Even though I am living a better, healthier life there are of course some downfalls. I still struggle, it is not easy. Exhaustion, migraines, body pain, balancing my diabetes, liver disease, high blood pressure and Kidney disease. Unfortunately, my Kidney Disease has progressed rapidly and I am now in Stage 4 Kidney Failure. I will eventually need a Kidney transplant. This was a hard pill to swallow considering I was born with a genetic lung disease. Now I just have to deal with another obstacle of challenges. I will get through this just like I always have. I used to get anxious about getting older and what my life would look like but now I know I'll be around for a little longer. 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, my amazing boyfriend, puppies and friends! I am one lucky woman. For my age my lung function is in a great range and I cherish that every day. 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. 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 25 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.

The past year has been filled with plenty of ups and downs, but two things I can say I'm extremely grateful for are my 2-year anniversary being on Trikafta and turning the age of 25. 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. Turning 25 was a huge milestone for all of us and we are eternally grateful seeing how things look today thanks to modern medicine. I still struggle with significant fatigue and digestive issues, and Covid kicked my butt earlier this summer, but overall I feel much healthier and hopeful for a long future ahead thanks to Trikafta.

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 life saving 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 Breslin 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 Fools 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 31 years old, a college graduate, working full time, married to the most amazing man, and a mom to a 2-year-old boy and we just welcomed our baby girl, Lucy, in November! 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:
Ruby Steuart

Hi! My name is Ruby Steuart and I'm 23 years old. I'm a second-year physician assistant student at Arcadia University - a passion that was inspired by my life with cystic fibrosis. The hospital has always been a safe place for me and ever since I can remember I have had a great admiration for my entire care team. I want to help others the way they have helped me!

I am part of the 10%. The 10% who cannot take the life-changing, "miracle drug", Trikafta, which was approved in October 2019. Watching this drug absolutely transform some of my closest CF friends' lives has been an incredible experience! I have watched the hard work of the CF Foundation pour life into fellow CFers. I can't help but feel overjoyed. I know, without a shadow of doubt, that the CFF will work tirelessly to support the development of a drug for our 10% and ultimately a cure for all.

Throughout the years, my passion as a cystic fibrosis advocate has truly gone through the roof! My favorite days are the days in which I get to be deeply involved in advocacy and fundraising for the CF Foundation and the CF community. I love fighting this fight against CF with the most amazing fellow CFers, advocates, providers, and researchers by my side. We are blessed to have people like you - so eager to support research and advancements in finding a cure for cystic fibrosis. Thank you to the Cystic Fibrosis Foundation for everything you have done and continue to do! Now let's finish this fight!­

AMBASSADOR SPOTLIGHT:
Thelonious Johnson

My name is Thelonious Johnson and I am a sophomore at Salisbury University studying Early Childhood and Elementary Education. I was diagnosed with CF when I was a month old after having a bowel blockage at birth. CF has been a challenge at times with the many things I must do to stay healthy. I pay attention to things in my life that those without CF do not consider; often mundane, every-day things, such as worrying about secondhand smoke, potentially harmful bacteria in hot tubs and pools, and even getting enough rest. I factor time into each day to complete PT and breathing treatments. While this is normal life for me, at times I still find it tiring and it sometimes makes me feel mentally, physically, and even emotionally drained. I have been lucky and blessed with a family and an amazing CF care team at Johns Hopkins who have always been there for me, supporting me through every avenue, ups and downs, that CF takes me.

When I was 16 years old, I was hospitalized after a micro bacterium was found in my lungs during a routine bronchoscopy. During this disappointing time, I truly learned how CF can negatively affect my life and just how much we in the CF world rely on each other to keep moving forward. I have had the privilege to participate in several studies to help further the health of everyone in the CF community. The CF Foundation has made many of these studies and amazing breakthroughs possible.

In December of 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. The CF Foundation works constantly to create a life without CF not just a dream, but a reality.

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 help make a huge difference. I ask that you consider sharing my bio on your social media, or by calling someone with CF who is stuck alone 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.

AMBASSADOR SPOTLIGHT:
Kaite Rose

Kaite Rose is a CF fighter, an advocate and an adventure seeker! And she is soaking up every moment of her AT life (after Trikafta)! Diagnosed with Cystic Fibrosis at 3 months, she is the only one of her huge extended family to have the disease. With such a close and loving family, her childhood was chaotic and exciting! And her parents never let her miss any treatments. Finding time for routine in the midst of chaos set the foundation of how important daily care was for health, happiness and maintaining the ability to pursue her dreams.

BT (before Trikafta) Kaite Rose was managing her symptoms as best she could, while never taking the small moments for granted. As her reached the end of her 20's, she was facing the reality of worsening symptoms that had her spending less time with her family, friends and career, and more time doing treatments, resting from fatigue and recovering from infections. She was contemplating moving back in with her parents to be able to better care for herself. Then, in Dec 2019, Kaite's life was renewed! She began taking Trikafta and within three days her once rumbly lungs were clear! They symptoms and her body started to heal!

Today she lives in Philadelphia with her dog, Uncle Marty, and her Fiancé, Sam! Kaite Rose has been able to finally travel Frontier (with ONLY a personal item, and no medical baggage)! The Dream, right!? She is able to plan for a future in a way she never thought possible. Together, Kaite Rose and Sam are on a mission to fully embrace the little moments of life together, while raising awareness for the 10% of the population that Trikafta does not help and fight for those who do not have access to Trikafta. The fight for a cure and treatment distribution is not over!"

Kaite Rose is excited to continue her work with the Cystic Fibrosis Foundation, especially in the time of Social Media where she can connect with CFers around the world! The Cystic Fibrosis Foundation is SO CLOSE TO A CURE and it's thanks to people like you and events like this! We aren't there yet, but we can see the finish line! Let's sprint!

AMBASSADOR SPOTLIGHT:
Jeff Breslin

Diagnosed with Cystic Fibrosis at 3-months-old, Jeff Breslin knows first-hand and believes that pain and adversity are things we all face at different times in our lives. Living with Cystic Fibrosis has provided perspective throughout Jeff's life. With that perspective, Jeff has also been on the receiving end of incredible care and the life-saving treatments funded by the Cystic Fibrosis Foundation. With gratitude for the advancements in treatment and care, Jeff has dedicated his professional career to the service of others. He has created, launched, and managed projects with the Cal Ripken, Sr. Foundation, Under Armour, and the Boys & Girls Clubs of Metropolitan Baltimore. Jeff is currently the CEO of the Boys & Girls Clubs of Metropolitan Baltimore. In his free time, you can find Jeff enjoying time at home with his wife Rebecca and their son, George.

AMBASSADOR SPOTLIGHT:
Matthew Hamburger

Hello, my name is Matthew Hamburger. I was diagnosed with Cystic Fibrosis at 8 weeks young. I am now 31 years 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 April 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.