The Passion continues on Saturday, June 17th with an afternoon worth savoring. Join fellow foodies on the Waterfront Promenade, Four Seasons Hotel Baltimore for a rare culinary experience. Guests will feast on delectable bites by Baltimore’s hottest culinary talent and sip stylish cocktails and craft brews. With refreshing sights and sounds, relish in this epicurean adventure. Tickets are all inclusive with proceeds benefitting the Cystic Fibrosis Foundation.
“Moving into this decade is scary - 30-something sounds a heck of a lot closer to 41, the average life expectancy of someone with CF - than 20-something did. It's terrifying to move into an age group where there are fewer of your peers. To watch your CF friends get sicker just because they're getting older... We all still have a lot of life left to live, dreams we want to fulfill: I want to grow old with my husband, I want to watch my friends' babies grow up, I want to read the 256 books I have sitting on my shelf.
Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum. YOUR support can help all of us with CF live our dreams.
Thank you from the bottom of my heart for joining us in this fight!”
“I was diagnosed with CF was 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.”