The Playbook On

Advocacy

Fine tuning voice and perspective and using it effectively to change policy.

Advocacy

What we did

At I AM ALS, we’ve made changing policy to meet the needs of ALS patients and loved ones a key objective for our organization. Through compelling messaging, patient testimony, persistent communications and a multi-tiered network of advocacy, we’ve been able to move the needle. Our not-so-secret weapons: patient and caregiver advocacy captains and organization leadership have built relationships with Congressional leaders and developed Congressional champions, at least one individual impacted by ALS has stepped forward representing every Congressional district, and we built a data-driven system to let everyone in the ALS community and beyond take action.

We have developed a coalition across ALS organizations to speak with one voice, where possible, allowing engagement from organizations even those for whom advocacy is not a top priority. This formula has delivered a Congressional ALS Caucus more than 150 strong, dramatically increased federal ALS research budgets and helped deliver legislation that brings financial benefits to ALS patients and their loved ones more quickly.

Don't do this

  1. Delay starting the advocacy process
    Growing a network of policy champions takes time. Think about your objectives and reach out to policymakers and policy influencers early on.
  2. Shy away from coalition-building
    Even if you’re the new organization on the block, it doesn't mean you can’t help bring together partners to work for a common legislative goal. In fact, it may mean you have exactly the right perspective to convene a group with shared interest. See what’s already established, make connections and fill any gaps.
  3. Get discouraged or intimidated
    If at first you don’t succeed, try again. The best way to go about coalition-building is persistence. Constantly engage new audiences to build political support.
  4. Be afraid to make big -- but specific -- requests
    Don’t be afraid to make bold asks of important decision-makers. If you have a compelling goal and authentic testimony to make the case, you can make a major impact.
  5. Forget to stay in touch
    Build a relationship with key legislators and their staff to meet your goal. Persistence is key and providing policymakers with updates on your efforts will keep you top of mind.
  6. Avoid involving the patient community
    It's a mistake to leave advocacy to well-connected professionals. Patients are experts through their experience and should be at the center of any government affairs campaign -- always.

Best practices

  1. Establish a legislative working group early on
    Identify your main champions early on and work to establish a large, active coalition of policymakers committed to supporting research and/or the needs of your patient community from the start.
  2. Make specific, pointed advocacy requests
    Do your homework and make requests related to specific bills, regulations or agencies. By being specific, you and your advocates will have more success navigating the legislative process.
  3. Target the appropriate policymakers and staffers
    Making an impact relies on talking to people in a position to make the policy change you want to see. Ensure you’re speaking to staffers and elected officials in the relevant leadership roles and on relevant committees, for the issues you want to affect.
  4. Stand out by being the most informed person in the room
    By staying informed, prepared and engaged in the policymaking process, organizations and advocates can become a reliable expert source for policymakers and are more likely to win support. Become an expert on the issues you're advocating for!
  5. Connect with key leaders by making it personal
    Show key stakeholders how the disease affects them by focusing on their constituents, committees and policy priorities.

Your turn

Below are worksheets to get you started in shaping your organizing approach. They can be downloaded or saved in your queue by clicking the flag in the top left corner of each worksheet tile and emailed to yourself in the top right corner of your screen to begin work immediately as you shape your future movement. To access worksheets across all categories of this Playbook click "see all worksheets." Nervous? Don't be. You got this.

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