Each month through the end of the year, we’ll feature a special person or team who played an integral role in the 2013 Great Strides walks. We hope you’ll find this story to be inspiring as we continue to make Great Strides in our efforts to find a cure for CF!
Raven Pugh – Ryder’s Stryders
Walk: Huntington Beach walk, held May 4, 2013
Chapter: Los Angeles Office – Southern California Chapter
Team: Ryder’s Stryders led by Raven Pugh, her husband Britt, and their son, Ryder, 3, who has CF.
Impact: Raised $20,000 so far in 2013
Why I Walk
Raven Pugh, mother of Ryder, 3, who has cystic fibrosis, is determined to help all families touched by CF. This year her Great Strides team, Ryder’s Stryders, raised $20,000, and Raven is already looking ahead to next year. “Our family is 100 percent committed to seeing the rest of the CF community get their miracle. We aren’t going to finish until everyone has a treatment of their own. It’s why we walk in Great Strides,” Raven said.
Learning that Ryder has CF was the most difficult phone call I’ve ever received. It was one of those drop-you-to-your-knees moments. We really didn’t know much about CF or about the medical advancements being made, so we didn’t think we were going to have a lot of time with Ryder.
It wasn’t until we got in touch with the Foundation that we learned about all of the progress that’s been made. Ryder is eligible for Kalydeco. Knowing there is a light at the end of the tunnel really saved us.
We feel so lucky knowing that Ryder has the G551D mutation. Our family is 100 percent committed to seeing the rest of the CF community get their miracle. That’s our goal. We aren’t going to finish until everyone has a Kalydeco of their own. It’s why we walk in Great Strides.
What I Look Forward to
The best part of the walk is being able to see friends, family and the entire community come together. Sometimes we have people who we haven’t seen in months, or even years, fly out to support us. It’s so exciting to watch people get motivated not only for you, but for other families touched by CF.
What We’re Thankful For
Before Ryder was diagnosed, before we knew anything about CF, my husband and I were pretty self-involved. We didn’t have a cause. We just lived our lives. Once Ryder was diagnosed, we found our cause and it really impacted our friends and family. Everyone just stepped up and made it their cause as well. That support has given us the courage to face this disease head on.
Tips for Other Great Strides Teams
I would encourage people to learn as much as they can about CF and keep themselves active with the Foundation. Through the Foundation, you find community and an amazing array of resources, from educational and medical information to tips and tricks for building your Great Strides team.
My dream is that Ryder won't have to wake up on his wedding day, Christmas, or birthdays and have his first thought be about CF or starting his therapy or taking numerous medications.