One lucky advocate, Katrina Young and her son, Sean, who has CF, were even invited to the White House with Foundation President and CEO, Preston Campbell, M.D., to share their thoughts on the future of precision medicine.
On Feb. 25, volunteer advocates attended nearly 200 meetings with Congressional leaders and their staff members about the need for increased, consistent funding for the National Institutes of Health to support basic and translational science, which supports the research behind CF therapies. During these visits, they also discussed the need for robust funding for the Food and Drug Administration to make sure that drugs are reviewed swiftly for
This two-day event kicked off on Feb. 24 with a training session for advocates about policy issues that are important to the CF community and about how to tell their personal CF story. During a special reception, three Congressional members were honored with Legislative Champion Awards for their tireless work in helping to pass the 2015 Ensuring Access to Clinical Trials Act and their overall support of the CF community.
The next morning, CF Foundation leadership met with the volunteers and held a panel to discuss recent advancements in cystic fibrosis treatments and the future of CF care. Before the advocates left for Capitol Hill, Dr. Campbell offered them some words of encouragement, saying, “Your story is the important story that legislators need to hear. And at the end of the day, you will feel great about what you've done.”
In addition to the advocates representing the CF community on the Hill, Dr. Campbell, longtime CF Foundation advocate and volunteer Katrina Young and her son Sean were invited by the White House to attend the Precision Medicine Initiative (PMI) Summit. They were given the chance to hear about the progress made in precision medicine since the launch of the initiative more than one year ago and participate in round table discussions on the future of this type of care.
“For a lack of a better word, it was the coolest day I ever had,” Katrina Young later shared with her fellow advocates. “Our story is part of the Precision Medicine Initiative and I was so proud to be there and represent the CF community.”
After all the Hill meetings concluded, the volunteers came together one last time for a special dinner to reflect on their day and share their own personal CF stories with one another. “I am full of gratitude right now. I remember a few years ago seeing advocacy highlights online and I thought to myself, 'I want to do that,'” said Holly Bendz, whose 9-year-old daughter has CF. This year was her first time at March on the Hill.
Frank Spera, a grandfather of a 12-year-old with CF and first-time advocate, echoed Holly's sentiment and shared why he started advocating, “I wanted to turn my grief into action.”