Find topics of interest from “Advocating for Change” including:
The Why – Why is advocating important to you? The power of your story.
Kelly’s Why – Enough is Enough (1:42)
Jodie’s Why – Protecting Others (5:45)
Sharing Prevalence and Proof (9:05) – What we are asking for and what we want. Data points to pull into your story when talking to your state representatives and industry representatives.
What is an Advocate? (12:14) – Standing up and doing something for ourselves and on behalf of others.
Steps to Make Change (16:09) – Understanding how to effect change.
Advocacy Toolkit (18:13) – How you can help and go at the pace that works for you.
Report to the FDA (30:40) – Report to the FDA: Advocate for the safety of others. You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report here.
Grassroots Advocacy (31:09) – taking it one step at a time, finding your strength, visualizing the task. Informing your elected official so they can carry the torch of awareness forward. Grow your connections and keep opening doors.
Identify the Stakeholders (39:02) – Medical, Academic, Legislative, Regulatory, Industry, Research. Reach out on the local and state level to find ways to bring change.
Getting Started in Grassroots (43:06) – what are my next steps?
Tips (55:01) – what to do and what to bring as you advocate