This year's team is a collaboration between ValoraPlays and CalamityRosie. We hope that you’ll join, donate, walk or share the Valora’s Gum Drops team page. Any way you choose to help us is greatly appreciated!
Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
ValoraPlays and CalamityRosie have teamed up to support the Cystic Fibrosis Foundation because it’s a cause that is very close to their hearts. They have been friends for over a decade and Valora knows the effect that cystic fibrosis (CF) has had on Rosie and the toll it has taken. They wanted to come together and make this team to give back to a cause that has done so much good in the CF community, as well as work to find a cure.
Cystic fibrosis is an illness where the salt channel doesn’t work correctly and causes thick sticky mucus. The lungs and digestive system are two common places that are affected by CF. The mucus in someone’s lungs is hard to move and get out, it becomes a place where bacteria and molds can grow easily which in turns makes more mucus and can cause a lung function decline. Breathing treatments and other therapies are used to help loosen and clear the mucus from the lungs. In the digestive system in a person with CF, the pancreas can be blocked by mucus, which makes the person have to take enzymes to be able to digest food. Absorption is another common issue and weight gain is hard for some with CF and vitamin supplements have to be taken. Like most diseases, not all people with CF have the same experience. A lot of factors contribute to their experience with it.
Rosie was born with CF and officially diagnosed at 6 months. For the most part Rosie was relatively healthy. Life for her was interrupted every few years (occasionally and later in her life it was months between) for a hospital stay so she could get IV antibiotics and other therapies to treat lung infections and get her lung function back up. Life was relatively normal for most of her life, or as normal as it can be for someone with a chronic illness.
It was only in 2018 where her health really started to decline. That year Rosie began getting evaluated for lung transplant. Every six months or so she’d have an evaluation at a lung transplant center, and each time she was told that while her lung function was in the 35% range, she was still too healthy for a transplant. It was mixed emotions for her; she was happy to be able to put it off, but also had trouble with her quality of life. She had a near constant cough, had trouble walking long distances without getting short of breath, sleeping was interrupted with coughing fits, and was just plain exhausted.
However, in late 2019 she was told she qualified for the gene modulator, Trikafta. A drug that targeted the salt channel in the body and helped it function correctly. In the beginning of 2020 she started it. Within a few weeks her lung function went up to 45%, she was able to do more, sleep better, and hardly coughed at all. Today her lung function is at 50%, while it’s not at 100%, she feels like she’s 100% better than she was just a few years ago. She’s graduated from college, is able to live a relatively normal life, and is excited for the future.
The Cystic Fibrosis Foundation was an integral part of making Trikafta, and other gene modulators possible. Without the support of people like you, this wouldn’t have been able to happen. Great Strides is an important fundraiser for the cause to find a cure for CF. Valora and Rosie hope that you’ll join us in one way or another to support this cause. Donating funds or taking a walk and tracking it are both equally valued. Support is support and it is very much appreciated in all forms!
Click “Donate now” or you can join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising. Set a personal goal and see what we can make happen when we all work together!
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.