The Playbook On


Ensuring those living with the disease are always involved where science is happening.


What we did

Compared to other diseases and as a measure of its devastating impact, ALS has historically been underfunded in public and private research spending. As a result, some of I AM ALS’ most critical achievements to date include quadrupling the Department of Defense’s ALS Research Program budget and introduction of a $25 million National Institutes of Health program exclusively for research into ALS over a five-year period.

I AM ALS also has led an effort to include members of the ALS community impacted by the disease on more than 20 patient advisory boards at biopharmaceutical companies and at ALS research conferences to ensure their input is heard and incorporated into ongoing clinical trial design and research.

Don't do this

  1. Think there's only one way to raise research funds
    There are tried and true ways of bringing in donations but it’s always possible to expand the pool of money available for research and support of those impacted by the disease. Be creative in finding new opportunities or audiences.
  2. Compete with other organizations for resources, if possible
    Reach out to different funders and bring in new networks to your disease of focus, as much as possible. There is great benefit in collaborating with existing organizations and that may be more challenging if there is perceived competition for funds (Also, don’t buy into that competitive stance once you’re the veteran organization so we can wipe out that old notion!).
  3. Get involved in research -- unless it’s your strong suit
    The world of biomedical research is complex and it is difficult to ensure you are having the greatest impact. Not all rare disease organizations need to focus on it, so be sure you have a clear strategy and value-add before going the research route.
  4. Forget to celebrate the small wins
    Major breakthroughs in the form of treatments and cures may get a lot of media attention while step-wise advances in research don’t always have their day. Don’t neglect these important moments. Find ways to show progress and build hope among your community.
  5. See research funding as the only objective
    Chasing a “cure” can be an enticing silver bullet, but it may not help the current community impacted by the disease. Don’t lose sight of the immediate positive impact you can make on support, policy, building community or something else.
  6. Leave out those living with the disease and caregivers
    There are no greater experts nor motivated learners about research than those living with the disease and caregivers. Find opportunities to work with government agencies, academic researchers and biopharmaceutical companies and make sure those living with the disease are in the room and leading the way where research and progress are being discussed.

Best practices

  1. Make specific, targeted funding requests
    Be clear and transparent when explaining how donors’ money will be used and live up to your promises. This will help build trust.
  2. Push to make the voices of those living with the disease heard by researchers
    One of the greatest benefits a patient-driven organization like yours can have is to increase the community’s input across all steps of the research process -- you could change the course of research and the design and execution of clinical trials by ensuring those living with the disease and caregivers expertise is incorporated.
  3. Collaborate with other research institutions
    If there are opportunities for collaboration on funding research, uniting with similar disease groups can help create a broader understanding of your disease of focus and a stronger advocacy base for research and fundings needs.
  4. Focus on the self-sustaining research cycle
    Don’t forget: Every dollar spent on research has the potential to generate data that leads to more research and an eventual breakthrough.
  5. Remember that there is no donation too small
    Every dollar counts. No donation is too small, and the impact and size of your donations can grow over time. Recognize and treat every person who gives to your cause as an essential part of your mission.
  6. Be a source of information on existing research
    Collect and distribute new and existing research in one easy-to-access location on your website. This will show your disease community and others that you are an important resource.

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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