Posted on August 20, 2020 |
This article was written by Bret Denning, JD.
What does it mean to be an advocate? That’s an interesting question that can have several different answers. For some, it means working to help others through education and outreach. Advocacy is not something out of reach – it simply means to make people aware. The COPD Foundation wants to help you recognize that as someone living with COPD, you have a voice that needs to be heard in whatever way is most comfortable for you.
In this video, Become a COPD Advocate and Make and IMPACT!, Stephanie Williams, Senior Director of Community Education Programs at the COPD Foundation, had the opportunity to speak with John Linnell, a state captain from Wisconsin. As a state captain, John is one of our most passionate advocates and is always willing to lend his voice in any efforts to help the COPD community. He believes that it is critical for the patient voice to always be heard. John wanted to share his story of how he became a COPD advocate and what it means to him. After being forced to leave the workforce due to COPD, John realized he had two options: sit home and “be that old man with a hose in your nose” or get involved and help educate others through their journey. He knew how challenging his own journey was and helping others overcome barriers like the ones he faced was an enlightening experience for him. It was a desire to speak on behalf of others that brought him together with the COPD Foundation and our State Captains program. John wanted people to know that even if there is no cure for COPD right now, the disease is not a death sentence and that there is so much that can be done. How anyone deals with their COPD is completely up to them. John rejected the “woe is me” approach and decided to not only live with it but work every day to help others. To him, that is the point of advocacy—let your voice be heard!
As a COPD advocate, John wants others to become involved! He emphasized that there is not a “one size fits all” approach to advocacy and that people can find what makes them the most comfortable, from handing out literature at a health fair or participating in a conference to speaking with pharmaceutical representatives or members of Congress. John gave an example of a friend who was not comfortable with public speaking but was a powerful advocate through social media. The question thus becomes, how does one become a powerful advocate? This is where IMPACT comes in.
John was a participant in our initial IMPACT event in 2019. He pointed out that while events like IMPACT are designed to show newcomers how to get involved, even experienced advocates like him can develop new skills and become more effect advocates. Every form of advocacy strengthens the voice of the COPD community. The important thing to know is that anyone can be an advocate.
A key feature of IMPACT 2020 is setting up phone calls with elected officials and their staff members. Sometimes advocates are disappointed when a legislator is not able to attend a meeting and when a member of their staff to take their place. It is important to understand that those staff members may be the ones who can get things done. Those staffers often spend more time speaking with community members and are able to get a specific topic such as COPD funding on the legislator’s agenda. Through his experience, John learned that building a relationship with a key staff member can have more of a long-term impact as you can build a relationship over time.
Do you want to become an advocate for the COPD community? Consider joining us for our virtual IMPACT 2020 training event on September 22-23, 2020. You can learn things such as how to become an effective storyteller and how you can use your own stories when talking to members of Congress. We will even arrange for you to speak with your own Representative or Senator so you can urge them to support funding for COPD research in the Centers for Disease Control (CDC) budget and to invite them to join the Congressional COPD caucus. John would love to have you join us and so would we!
Want to know more? Watch the IMPACT2020 Informational Webinar to learn more about IMPACT 2020.
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