AMBASSADOR SPOTLIGHT:
Laney Siems

I was diagnosed with cystic fibrosis when I was 5 months old. Two 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 share my experience with CF through my Instagram page, @lifeaslanes. I was recently reminded why it’s so important to be a voice and share my story when I was contacted by a husband and wife who are expecting their first child. They had just found out that she will be born with CF. We FaceTime’d for 2 and a half hours chatting about what CF is, my experience, resources and doctors for them. It was one of the most rewarding things to be able to help out in the little way I can for them. I have two new friends for life after that call – soon 3! When I started the page on Instagram it felt so small and scary, but knowing I can help even one person is well worth the vulnerability.

Trikafta has changed my life and the lives of many others with CF. However, this is not a cure, and there are still 10% of CFers who cannot benefit from drugs like Trikafta. We won’t stop until CF stands for Cure Found! So keep the donations, awareness and education coming!

AMBASSADOR SPOTLIGHT:
Jordan Magsamen

Hi, my name is Jordan Magsamen and I am 27 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 28 this year and that means I'm only 2 years 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 life so much. Even though I am living a better, healthier life there are some downfalls. I still struggle about 50% of the time if not more. Exhaustion, migraines, body pain, balancing my diabetes, kidney disease, liver disease and high blood pressure. I used to get anxious about getting older and what my life would look like but now I can truly just smile about it and thank all of my supporters. 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

Hey everyone! My name is Colleen, I am 24 years old and was diagnosed with CF when I was just two weeks old. I am so excited to be on board with all of the other amazing CF ambassadors for this year’s events. This past year, although one of the most difficult we have all faced, was still filled with some things I am very grateful for. For one, I’ve now been on Trikafta for a full year and am feeling healthier and more energized than I have in a long time! Minus a few strange side effects and bumps in the road, this drug really has changed not only my physical health but also my outlook on my life and my future, which I am so thankful for.

In other news, I’m now fully vaccinated against Covid-19, I’m graduating this spring with my master’s in social work, and my older sister is getting married this summer. So much excitement in a short amount of time and I’m just trying to soak it all in.

I’m excited and hopeful that we will start to have some events for the foundation in person as the world becomes a bit safer. Thanks to events like Feastival and the generous support of all our donors, doctors, and researchers, we have made huge strides towards a cure for this brutal disease. BUT we aren’t done! There are still too many CF fighters that cannot take Trikafta or any other effective treatment methods, which is something we absolutely need to keep fighting for. I’m so thankful for my support system that has stood by my side the past 24 years and I know they will keep fighting with me until everyone has an effective treatment option and one day a cure! Now let’s do it!

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 30 years old, a college graduate, working full time, married to the most amazing man, and a mom to a 1 year old boy! 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 22 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 dancing giggle fest! 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.

Kaite recently started taking Trikafta, and her experience taking the drug is incedible. “Everyday that I wake up and my lungs don’t crackle and pop when I take my first breath; and it doesn’t hurt just because I’ve been laying for a few hours, is a feeling I can’t explain. Unbelievable! To open my eyes and in the first instance when I subconsciously assess my world, and truly physically feel like you’re living a gift that’s something I didn’t know. Taking this drug also comes with the responsibility of knowing not everyone with cystic fibrosis has access to the drug that has been given to me by circumstantial fortune. And there is 10% of the CF population which Trikafta does not help. So the fight for a cure and treatment distribution is not over!”

Today, 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 CF’ers 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 – a youth development organization reaching more than 1,000 young people across Baltimore and on Maryland's Eastern Shore. In his free time, you can find Jeff enjoying every second of being an uncle to nine awesome nieces and nephews, cheering on his Philadelphia Eagles or tackling a new recipe in the kitchen with his wife, Rebecca.