The Playbook On

Engagement

Communicating with advocates and stakeholders.

Engagement

What we did

At I AM ALS, our greatest superpower is the engagement and relationships we have with people impacted by ALS — patients and their loved ones and caregivers. We strive to speak with the voice of the community, which has brought in those patients, caregivers and surviving caregivers who may not have been actively engaged in advocacy and awareness efforts before. Through what we have built and by putting power in the hands of those directly affected by this disease, we mobilized tens of thousands of people  — inspired by the personal stories and the mission — to help make a different future.

I AM ALS has focused on sharing diverse voices and perspectives. We prioritized telling real stories of those impacted by ALS while including staggering, little-known facts to connect people to the movement and educate them about the disease along the way. We made a commitment to meet people where they are and frame these messages to the right audiences, at the right place and time, to drive the most impact.

Don't do this

  1. Forget to be a resource first
    Your organization is one of the ultimate sources of information for your community on important developments -- relay facts and stay honest and transparent about your progress.
  2. Take your community for granted
    Don’t only reach out for a fundraising ask or request to take action, share positive messages of appreciation and progress. People want to feel a part of something important, something that is making a difference.
  3. Create a fragmented landscape
    Develop relationships with other related patient organizations. Find places where you align and find opportunities to unite -- creating a habit of cooperation.
  4. Leave out those impacted by the disease beyond the patient
    In addition to patients, work to maintain engagement with loved ones and caregivers, even if a patient passes away. Many have become experts in various aspects of the disease: design ways for them to be part of your mission, a focus of any support you provide and give them a place to realize the change they know needs to be made.
  5. Forget that most people want to help
    People want to say yes when it comes to helping a cause they care about – especially when it affects the people they love. As new volunteers show interest, speak to them and foster their ideas, finding the best way for them to get involved.
  6. Be afraid to ask for help
    There are many people who want to help a good cause. Find ways to put all offers to help to good use and be prepared to ask for assistance beyond asking for funding. You may just find how strong and talented your communities truly are.

Best practices

  1. Build your community by starting with your existing network
    Have your connections reach out to their connections to create a mushroom effect, allowing your community to organically grow
  2. Engage volunteers by establishing strong committees
    Whatever you want to call it -- committees, teams, groups -- create them and invite volunteers to help build community, ownership of ideas and more in-depth engagement.
  3. Intentionally build in connections to other organizations
    It is easy to get caught up in your own organization and start to isolate your work from others. Be sure you are reaching out -- attend meetings of importance in your field, schedule recurring meetings with your most important collaborators and build bridges between your advocates and those of other organizations so that where it is possible you and other disease organizations are showing a united front and making progress together.
  4. Provide resources to let people take immediate action
    Create a resource hub where your community can take action, such as hosting an awareness event or calling elected officials. Tailor it to your goals, but always have an answer to the question: how can I help?
  5. Be yourself on social media
    Encourage staff and volunteers to use their social media accounts to reach new audiences, share personal stories and engage with key policymakers and/or media outlets. Each post can make a difference.

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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