Despite challenges often faced when traveling with a chronic pain condition, 19 advocates and a handful of caregivers rallied together in Dallas, TX, for a U.S. Pain Foundation Advocacy Summit. The goal was to help people with pain understand how they can take action at the state and federal level and influence positive change for the pain community. Participants were selected to attend because of their exceptional efforts to engage and speak out about pain in the past.
“We were delighted to get to meet, in-person, this incredible group of dedicated advocates,” says Shaina Smith, Director of State Advocacy and Alliance Development. “Two major themes for the training were the power of sharing your story, and the ins and outs of current pain-related legislation.”
Adds Cindy Steinberg, National Director of Policy and Advocacy: “Our hope is that these pain advocates understand the many avenues they can use to speak out about the need for better pain care and know that each of their efforts can make a big difference.”
The weekend started off on Friday, Oct. 18, with an overview of the organization’s programs by Nicole Hemmenway, interim CEO, followed by an ice breaker activity that had everyone up on their feet, talking, and laughing. An optional gentle yoga session, led by summit attendee and yoga teacher Ryan Drozd, concluded the evening.
Saturday was a full day of training and education. In addition to presentations by Smith and Steinberg, the agenda included two panel discussions (one of which featured two attendees, Mia Maysack and Michele Rice, and their expertise in advocacy), an interactive story writing workshop led by National Pain Report’s Ed Coghlan, and a meeting with lawmakers role play exercise. (Read more about Coghlan’s workshop here.)
Before ending the first day of advocacy training, attendees were paid a surprise visit by inspirational guest speaker and former NFL LA Chargers linebacker Mike Moore. While addressing the room, Moore opened up about his pain journey and shortened professional football career.
“I was placed on injury reserve for a year,” Moore said while standing at the front of the conference room. “When you’re not playing, you get isolated…I didn’t want to be a burden to people, so I isolated myself.”
Today, Moore has dedicated himself to helping others, including kids involved in the Pediatric Pain Warrior Program. Moore welcomed questions from attendees and took photos with them.
The evening concluded with an optional support group meeting, led by Hemmenway, and yoga under the stars thanks to Drozd.
Sunday’s half-day training program centered on specific policy issues impacting the chronic pain population, advocacy tools to increase successful policy outcomes, and ways to stay engaged with the U.S. Pain advocacy team. Then Hemmenway presented each attendee with a certificate for completing the training.
Attendees were given an assignment checklist and a few days later, asked to complete a follow-up survey to provide feedback for future event planning. A few of the comments captured through the anonymous responses have been shared below:
- “I enjoyed learning about how much of an impact our individual stories as constituents can affect state and federal policies.”
- “I thought the summit was excellent overall. It actually exceeded my expectations, because I had no idea there was so much involved! The presentations and resources were excellent.”
- “My favorite part of the summit is the fact that I felt completely prepared to advocate for the chronic pain community.”
- “I really appreciated how prepared for our needs they were. My favorite part was the chance to meet and network with fellow patient advocates.”
To sign up to become an advocate with U.S. Pain, click here.
Special thanks to the summit sponsors: Genentech and Eli Lilly.