I Run to Cure CF!
**Update 5/22/25: The support thus far has been amazing! I want to thank everyone for their support for such an important cause! 💜
While lining up at the start line of my very first half-marathon, I found a small group of people wearing, "Breathe Team" shirts and was immediately flooded with emotions and thought of my life-long friend and her family. I am now running to help find a cure for Cystic Fibrosis. Your contributions, small or large are crucial to this effort! Please see below for a brief story to make it a little more personal.
A local family and close friend of mine has twin daughters who were born with a rare variant of Cystic Fibrosis. They are 2 of 12 people in the USA walking around with this rare form of CF. Lucia & Palmer are 4 years-old, fun, loving, and full of energy, although they have had a few bumps in the road. Lucia was hospitalized twice in 2024, once in May for 14 days of IV antibiotic therapy and once in October for 14 days where she needed IV antibiotic therapy and an embolization of bleeding blood vessels in her lung. January 2025, Lucia's lung started bleeding again so she was taken to Children's Hospital and ultimately had the upper right lobe of her lung removed. She has recovered well from surgery and is slowly becoming more and more like herself again. Luckily, Palmer has avoided the hospital in 2024 and so far in 2025, though has been on antibiotics frequently due to becoming ill.
Please consider donating today to help find a cure for their incredibly rare form of CF! Currently, they do not qualify for any modulators and treatments due to their rare variant form of CF. Every little bit counts! I thank you in advance for your support in this amazing and important cause!
Description
Cystic fibrosis is a rare, genetic disease found in about 40,000 people in the U.S. causing persistent lung infections and limiting the ability to breath over time. Those living with this disease are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers --all struggling each day just to breathe and live normal, healthy lives.
While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short. By participating in the Pittsburgh Marathon on behalf of the Cystic Fibrosis Foundation, I run to help add tomorrows to the lives of all people living with cystic fibrosis today. Please make a difference and support me by donating to my fundraising campaign today!
Then please consider joining the team! For more information - reach out to Megan Rula - mrula@cff.org
Recent donors
| Donation date | Donor name | Donation amount |
|---|---|---|
| Jun 29 | Liam and Lilly Sipes | $11.50 |
| May 25 | Lucia & Palmer Santichen | $27.48 |
| May 22 | The Ferguson Family | $27.48 |
| May 22 | Robert Distefano | $107.35 |
| May 22 | Amy Distefano | $213.85 |
| May 22 | Jenn, Jason & Dustin | $107.35 |
