Nearly 200 teen advocates from across the country -- almost half of whom are living with cystic fibrosis -- participated virtually in the Cystic Fibrosis Foundation's 12th Annual Teen Advocacy Day on June 24 and 25. Teen Advocacy Day, one of the Foundation's flagship advocacy events, typically convenes advocates to meet with members of Congress in Washington, D.C. This year, due to the COVID-19 pandemic, our teen advocates gathered virtually, marking the first time in the Foundation's history where this many people with CF were able to attend an advocacy event along with their loved ones.
The event included two days of training where teens learned different ways to share their personal stories and unique experiences living with cystic fibrosis, especially during an ongoing public health crisis. Specifically, the teens asked members of Congress to support the expansion of paid Family and Medical Leave for those vulnerable to the adverse effects of COVID-19 and for their family members during the pandemic.
The CF Foundation continues to lead more than 160 patient advocacy groups, shoring up support from lawmakers for expanded paid leave after hearing from the CF community of the worries and concerns of having to choose between their health and their paycheck. The U.S. House of Representatives passed legislation in mid-May that supports such expansion. The Senate has yet to respond to the legislation. Teen voices play an important role in our continual work to expand paid leave during this time.
During the event, teens heard from guest speakers, such as Jesse Barba, senior director of external affairs at Young Invincibles, a young adult advocacy group dedicated to mobilizing the younger generation to advance solutions on higher education, health care, jobs, and civic engagement. Barba helped participants see the issue of paid leave through the lens of a young person and reiterated the importance of civic engagement. During his discussion, Barba noted that “data points may come and go, but a good story lasts forever.”
U.S. Representatives Jim McGovern (MA-02) and Mark Amodei (NV-02), co-chairs of the Congressional CF Caucus, shared special messages about the power of teen voices when connecting with Congressional members.
A large portion of the event was concentrated on establishing connections between the teens through more than 20 breakout groups where participants began to explore how they would construct their stories. The breakouts allowed for participants to receive feedback from their peers before they started creating videos and other creative works to send to their members of Congress.
Abbi Hile and Talon Hyatt -- Foundation interns and former Teen Advocacy Day attendees -- mentored this year's participants and discussed the importance of sharing personal stories to advance policies that improve the lives of people living with CF. Both Hile and Hyatt have siblings with CF.
Watch the teens' videos and follow the Foundation and your local chapter on social media using the hashtag #CFadvocacy to track posts from the event.
To learn more information about the Foundation's advocacy efforts, text FIGHTCF to 96387*, or sign up for the Foundation's advocacy alerts.
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