2020 Virtual Advocacy Leadership Retreat: Key Takeaways From 20 Years of Advocacy

Advocacy Champions joined Advocacy staff online for the first Virtual Advocacy Leadership Retreat on March 10, 2020. Volunteers developed the entire program before COVID-19 made an in-person event unsafe. They designed keynotes, breakout sessions and “how to” advocacy posters in order to teach one another about advocacy leadership. Keeping programming true to the volunteer leaders’ plans while switching to a staff-run webcast was a unique challenge.

Many organizations cancelled their conferences, but volunteers had worked too hard for the Arthritis Foundation to call it quits. As Staci Penner put it, “Even Coronavirus can’t stop advocacy for arthritis!” With the input and patience of Retreat attendees, the Advocacy team was able to rework the programming from a three-day event to a four-hour live webcast. Over 90 volunteers tuned in to learn about advocacy strategies both new and time-tested. You can watch the full recording here.

First, participants took a walk down memory lane with two former Arthritis Foundation staff members, Kevin Brennan and Jennifer McBride, and long-time Advocacy Champion, Julianne Goodfellow. The “Grassroots Look Back/Look Ahead” panel covered the last 20 years of grassroots advocacy, from the early days of paper brochures to today’s world of selfies with Senators.  Julianne emphasized the importance of engaging in advocacy with your Live Yes! Arthritis Network Connect Groups. Jennifer, who created the grassroots advocacy program in 2000, urged all volunteers to participate in the governing process as much as possible. This had a big impact on Janet O’Brien, who said, “My key takeaway is I’m going to increase my contact with my legislators. I’m great at social media around big events, but not as good during the times in between and I’m motivated to change that!”

During the “Making the Most of Virtual Advocacy” panel, volunteers reviewed strategies for engaging by phone, email, social media, and the Action Center. Paula Haney was impressed by the reach of social media, saying, “As someone who has kept in touch with legislators through phone calls, in-person meetings, town halls and visits to the state house, I will make a special effort to engage in social media as a result of these inspirational discussions!” Virtual advocacy is becoming more important. Cindy Criswell Ducker pointed out that since her lawmakers have not shared their district schedules in years as a safety precaution, “We must engage with them online. Their tech-savvy staff will see our online presence as we engage them.  Don’t forget to tag the Member of Congress!” You can follow the Arthritis Foundation on Twitter, Facebook, and Instagram to stay in the know.

The day was filled with tips and tricks for making arthritis a public health priority – from setting a calendar reminder to wish your legislators happy birthday, to the nitty gritty details of policy “asks.” The “What Does it Look Like to Advocate for Arthritis Funding?” panel went over the main ask to Congress in 2020: to fully fund the Centers for Disease Control and Prevention’s (CDC) arthritis program at $54 million for the 54 million Americans living with doctor-diagnosed arthritis. Scott and Holly Thoms learned that at its current funding level of $11 million, the CDC arthritis program is not able to operate in their home state of New Mexico. “We would love to hear about changing this at the state level!” they said. Volunteers also got to see advocacy staff role play a meeting with a Congressional office. Katie Copenhaver appreciated this session for “showing how casual the conversation can be, how easy it can be to share your story. That it’s just a conversation about how you or a loved one feels.” You can amplify CDC funding ask by clicking here.

Another session, “Taking Action on A Mandate for Action,” demonstrated how to persuade legislators and employers to support arthritis patients by combining personal stories with statistics from the Arthritis Foundation’s Live Yes! INSIGHTS Assessment. The report on those statistics, “A Mandate for Action,” revealed 100% of respondents experience daily pain, and over two-thirds struggle with mental health issues. The session resonated with Taylor Bruce, who appreciated seeing “Examples of how we can use [the data] with legislators and employers.” The conversation also inspired Sarah Cloud, who said, “I would love to find a way to grow advocacy from a rural perspective. We can tailor this to those who don’t think they can be involved because they live [so far away.]” Courtney Bruce left the session feeling “more confident talking to [Congressional] staff, sharing our story, and giving them the statistical information.” You can take the Live Yes! INSIGHTS Assessment here.

Finally, attendees got to learn from posters their peers created during the Advocacy Champion Poster Presentation. Staff summarized the well-documented work of advocacy leaders on topics like “Sharing your story in three minutes or less,” “Building relationships with elected officials,” “Educating future health care providers,” and more. You can see all the amazing posters on the Live Yes! Online Community under the Advocacy in Action section. Visit them at liveyes.arthritis.org

There are so many ways to become a leader in advocacy, whether virtual or in-person. How will you #AdvocateforArthritis this year?




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