The Playbook On


Assessing what was out there to become what was missing.


What we did

At I AM ALS, we started by doing our research — not into the science of the disease, in this case, but about what was already being done well, where there were gaps and what patients and caregivers were asking for. We compared the community needs to our abilities, and mapped out an agenda that sits at the intersection. The questions to answer are what must be done to deliver for patients, what is already being done well and what unique capability can this organization bring to drive solutions.

What we landed on was we: deliver for patients today by providing navigation services, information and support; give patients and caregivers the platform to make the changes they know need to be made in care and the development of treatments and cures, and increase public understanding of ALS and bring in as many people as possible to take action.

Don't do this

  1. Take action or start an organization without doing your research
    Reach out to those living with the disease, other organizations, medical professionals, the general public and more to uncover gaps and to develop a unique mission.
  2. Work on the needs of those living with the disease that are already being addressed
    Steer clear of duplicative work, as much as possible. If something is already being done and those impacts are reaching the community, partner or promote, rather than duplicate.
  3. Assume what worked at the beginning will work forever
    Much like a business, advocacy organizations must evolve as the environment around the disease and community needs evolve. Be flexible and think about where the future barriers and opportunities will be, and start strategizing how to take them on next.
  4. Be afraid to make a splash
    Through any medium -- social media, an interview, an advertising campaign -- be bold and get your cause noticed. Making loud, positive noise for your organization can help you make progress on your mission.
  5. Shy away from making bold requests
    Remember, you are working on behalf of a community impacted by the disease for whom everything is on the line. You must be bold in pushing for change and urgent progress that could make a difference in their lives. (See section on Advocacy about how to do this in a smart, balanced way.)

Best practices

  1. Ensure your mission and purpose occupies an “advocacy whitespace”
    Identifying a new approach or unmet need enhances your organization's impact and helps bring in a broad network of champions from the start.
  2. Leave no stone unturned
    Take every meeting and speak to everyone who wants to be part of your movement early on. Explore every opportunity that presents itself and activate all talents in your entire network, community and/or disease of focus -- you may just find creative approaches and solutions not yet tried (and then share those with us so we can tell everyone else!).
  3. Continue conducting research among your network
    Use regular check-ins, surveys or listening on social media to keep a close pulse on your communities of those impacted by the disease, volunteers and beyond to find out what’s working, what can be improved, etc. Make sure those closest to the organization are holding you accountable.
  4. Build sustainable solutions and resources
    Invest your time and energy in creating platforms and technology that can evolve over time and help you achieve multiple goals. Building a system that provides data on how people are finding your organization and what of your resources and actions people are drawn to can inform and improve your impact.
  5. Reach out beyond the community of those impacted by the disease
    Work to maintain long-term relationships with family members, loved ones and caregivers who bring unique skills and experiences to the table and have just as much motivation (maybe more) to make a difference against the disease.
  6. Stay flexible and adapt to the world around you
    Without losing sight of your core mission, remember to look for opportunities that emerge as the media, political and economic environments change around you.

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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