The Passion continues on Saturday, June 9th with an afternoon worth savoring. Join fellow foodies at Sandlot Baltimore in Harbor Point, for a rare culinary experience. Guests will feast on delectable bites by Baltimore’s hottest culinary talent and sip stylish cocktails by Baltimore’s Bartenders Guild and local craft brews. With refreshing sights and sounds, relish in this epicurean adventure. Tickets are all inclusive with proceeds benefiting the Cystic Fibrosis Foundation.
“I was diagnosed with CF when I was 4 years old, so after 24 years of month long hospital stays, collapsed lungs, multiple sinus surgeries, hundreds of rounds of IVs and a daily routine of treatments that lasted up to four hour a day, I thought I had seen all CF had to throw at me. However, the last year of my life was worse than anything I could have ever imagined, as the disease progressed the limitations began to pile up – I had to stop work at the age of 23, and by the time I was 25, I could barely walk across a room. When your lung function drops to 12% even things you take for granted are taken away from you. You can’t brush your own hair, you can’t stand long enough to make food for yourself, and you can’t even get dressed without someone’s help. I was soon put on the transplant list and waited for a donor. But before I could get a transplant the doctors diagnosed that my body was no longer expelling the Carbon Dioxide it was producing. The gas was staying in my body and slowly poisoning me. My body that had fought against this horrible disease for 24 years was giving up, but I knew I couldn’t. On June 9th, I received my angel lungs. Since then my lung function as reached 102%. Although I am unbelievably grateful for my second chance at life, I still have the daily struggles of CF now added with transplant and diabetes complications. Transplants are by no means a cure for this horrible disease, we need a cure for CF. I want to be a part of that cure to make sure than no one else will have to face what I went through.”
“Living with CF makes you appreciate the little things. Whether it be nature, laughing with your best friend, or dancing to your favorite song, for us many of these precious memories were made in the hospital.
Johns Hopkins Hospital was our second home, a place we would spend our days filled with medications, procedures, and treatments just to stay alive. It is also the reason we met.
After receiving life-saving double lung transplants within 6 months of each other, our doctors told us that we were finally allowed to meet, no longer restricted by the Cystic Fibrosis Foundation’s Infection Prevention and Control Care Guidelines that prevents more than one CF patient from being in a room at a time.
The first time we could be in the same room together was one of the best feelings in the world. The very first thing we did was lift up our shirts to compare battle wounds. Suddenly all the scars that had previously made us feel so insecure felt just right. Like so many of the brand new experiences we have been blessed with since transplant, the feeling of being hug your best friend is indescribable.
One of the hardest parts of cystic fibrosis can be the isolation that is felt in this disease. Weeks spent mostly alone in a hospital room, trips missed because of complicated treatments that aren’t travel friendly, and the inability to spend time with others who are going through the same thing, because of the CFF mandated infection precautions that have to be taken.
Lung Transplant had been such a blessing, but still comes with many medications, restrictions, and of course all of the other CF complications in the other areas of the body where the disease is still present.
Because of this disease, we have learned to be grateful for every laugh, smile, hug, and memory we have together. Cystic Fibrosis medicine has advanced dramatically over the years because of people like YOU. We still have a ways to go, so we have both pledged to continue to fight for CF until it stands for Cure Found, and we would love you to be a part of this journey with us.”
“My name is Jordan, and I was diagnosed with Cystic Fibrosis (CF) at the age of 17 months old. Some aspects of my life may seem normal, aside from the hours of breathing treatments, airway clearance and taking many, many medications. These are all part of my daily routine, like taking a shower or brushing your teeth. There are also countless hours spent at doctor’s appointments and weeks at a time, in the hospital. When I was diagnosed, the average life expectancy for someone with CF was 29 years of age. Currently, for the first time, ever, 50% of the CF population is over the age of 18, an average life expectancy of 41 years of age. I have become a CF advocate, raising awareness and funds, to hopefully change my life and that of others with CF. I still have much 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.”
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.
Originally from Philadelphia, Kaite Rose was one of the first patients to be blessed with the vest from DuPont Hospital for Children. This innovative machine gave her the independence to do her treatments without having to depend on her parents’ to get home from work. This changed everything. She was now able to maintain her health and medical routine without missing a beat with her busy school and sport schedule. This life changer kept her healthy and happy as she ran track in high school and college. After she graduated Neumann University with her Bachelor of Arts in Communications, she realized maintaining her health would be more difficult without an organized sport to keep her in check. So when she was offered a spot on the original Team CF Cycling Team, she was ecstatic! As a competitive mountain bike cyclist, she found her passion promoting healthy active living for people living with Cystic Fibrosis! The experience also left her a bit of an adrenaline junkie! Since graduating from Neumann University, she has run a marathon, cycled from London to Paris with her Dad and took up rock climbing!
She amplified her voice by a few thousand watts when she joined the Mix Morning Show right here in Baltimore! She laughed her way into the mornings, fulfilling both her career objectives and her passion of representing and reaching the CF community, all before 10am!
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! She wants to send a big hug and a huge ‘THANK YOU’ to anyone who has donated in the past, plans on donating today or in the future! Every dollar that goes to the Cystic Fibrosis Foundation has helped fund not only to research for a cure to extend the lives of those with CF, but treatments that make the quality of lives of those living with CF a little more manageable and a whole lot more enjoyable and fulfilling! We aren’t there yet, but we can see the finish line! Let’s sprint!
“My name is Laney Siems. I am 24 years old and was diagnosed with cystic fibrosis when I was five months old. I am currently living in New York City with a job at Single Platform and I love it! I have had to think about my future and what it holds for me. I used to get nervous about this next chapter in my life but, with research getting better every day and the breakthrough of drugs like Orkambi and Symdeko, my worries about the future have become a little less stressful. Although things are progressing, we are nowhere near finished with this fight for a cure. Thank you so much for all you have done for me and the foundation. Also, thank you to the foundation and my doctors for all their support and hard work.
With your help, we have gained tremendous momentum in our quest for breakthroughs in treatment and care, and we are truly making a difference in the lives of people with CF. This is a reality because of events like Feastival, and you! We are humbled and grateful for your tremendous and continued support of the Cystic Fibrosis Foundation.”