Since January 2013, the ACTION Team has been meeting monthly to share information from around the country on how they are supporting advocacy efforts in their communities. With the mission to inspire others to take action for myeloma patients, this team works together to strengthen support for oral chemotherapy parity legislation, build strong grassroots networks in every state, and raise the awareness of myeloma across the country. Members participate in many different ways depending on their location, level of interest, and health.
We would like to honor everyone on the team as Advocates of the Month for July!
The biggest way they participate is as a resource for others looking to break into the advocacy space. A majority of our team members serve as advocacy liaisons to their respective support groups. Members like Ed, from San Francisco, report to their group the status of relevant state and federal legislation and the different programs group members can participate in via advocacy (i.e. postcards, in-district meetings, and e-advocacy).
The team created a user-friendly website where they can share their experiences and expertise with the community via blogging. Some examples of what you can find there are Cindy C’s “politician pitch” for the Cancer Drug Coverage Parity Act, HR 1801 and Cindy R’s tips on showing a video to get folks excited at her support group meeting.
In addition, many members of the team have made themselves available for direct communication with the myeloma community as a resource for folks who do not know how to get started in their area or have concerns about how they can fit advocacy into their lives while dealing with myeloma. Lisa P has been a valuable team leader for the Postcards for Parity Program by following up with folks who have signed up for the program to make sure they have success asking their friends, family and community members to take action.
Finally, the Myeloma ACTION Team’s twitter (@IMFAdvocacy) has become a leader in political social media in only four short months. Surpassing 200 followers, we have been tweeted and retweeted by politicians and used as a great example by other organizations. Big thank you to our resident social media guru, Cindy C!
The Myeloma ACTION Team is an amazing group of patients and caregivers who are working hard to make it easy for everyone to get involved, raise their voice and take a stand for all myeloma patients. I love working day by day with this amazing group of advocates who inspire me daily.