The Playbook On


Shaping support from the perspective of those living with the disease and caregivers.


What we did

I AM ALS’ greatest strength is its diverse and engaged network of patients, loved ones and caregivers. To support this community, I AM ALS set out to create tools that would improve the patient experience and offer resources that were previously unavailable. More than a year of research into patient needs and priorities and identification of existing gaps in other support options has resulted in two of I AM ALS’ greatest successes: the ALS Signal Clinical Research Dashboard and I AM ALS Navigation Program.

I AM ALS has partnered with outside consulting firms to build connections with lawmakers from across the country, videographers to shoot compelling patient testimonials and biopharmaceutical companies to provide input on clinical trial development and execution.

Don't do this

  1. Assume you know what those living with the disease need
    Avoid making decisions or speaking for those living with the disease without consulting them. Also, learn to accept feedback from those impacted. Feedback is how you grow!
  2. Duplicate existing efforts
    If something is already being done well by another organization, consider collaborating and adding to their existing efforts or just spreading the word instead of duplicating.
  3. Become overly bureaucratic
    As an organization built to deliver for those living with the disease, there is great benefit to staying nimble and being able to respond to the needs of your community.
  4. Say no to offers for help
    Get very good at answering the question: - how can I help? People ask that often and if you can find a way to make use of them and their talents, those are new resources you are bringing to your efforts. They can help you stay focused on your core strengths.
  5. Be afraid to look for outside support
    Don’t be afraid to ask for help. For example, think of the benefit of working with firms who specialize in advocacy, media and design, legal guidance, research, fundraising and more. Many have pro bono allotments and you can gain new perspectives and skills to make a difference toward your mission.

Best practices

  1. Focus on those living with the disease above all else
    When you focus on those living with the disease above all else, you’ll naturally be supported by members of the extended community (e.g. friends, family, etc.).
  2. Connect those living with the disease to existing resources and care options
    When people are diagnosed with a disease, figuring out the next steps can feel vulnerable and overwhelming. Make your organization the go-to resource for information on care options by creating them where they’re needed or connecting them to what already exists.
  3. Provide important information to all members of the community
    In addition to serving those living with the disease, provide resources and care options for loved ones and caregivers who also may need support and guidance. They need love, too, and are often overlooked.
  4. Seek to simplify and centralize complex information
    Put important resources in an easy-to-access place, such as a Clinical Research Dashboard where those impacted can easily sort through all available trials. This will improve the experience for those living with the disease and, BONUS, helps move research forward faster.
  5. Hire people who are passionate about working with people living with the disease
    Hire employees who are empathetic to the plight of those living with the disease and caregivers and are willing to go above and beyond to help people and see it as their life’s mission.
  6. Develop key performance indicators tied to positive outcomes for those living with the disease
    To optimize your objectives, set quantifiable goals that are directly tied to improving support and advances that matter to the community impacted.

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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Resource guide

This worksheet will help you figure out what resources are available within your community and how to create a resource guide.

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