Who we are?
We are an informal, open, autonomous, global network of people living with Amyotrophic Lateral Sclerosis (ALS) or Motor Neuron Disease (MND) who share a common commitment to thoughtful, respectful, ethical, evidence-based deliberation and dialogue on ALS/MND policy, research, care, and advocacy. We are a patient-centric think-tank – a site run by and for people living with ALS/MND – but we welcome and value input and ideas from all. We are especially interested in serving as a global forum for the community of people living with ALS/MND and caregivers, as too much of the current dialogue and activism on ALS/MND is US-centric.
Who we are not?
We are not a registered charity or 501(c)3. We are not a formal organization with paid staff. We are not an advocacy group here to tell you what to think or what to lobby for. We are not an echo chamber. We make no claims to speak on behalf of all people living with ALS/MND. Though we are patient-led, we do not claim exclusive “standing” to speak on ALS/MND matters. We do not solicit donations, and do not hold fund-raising events. We have no relations with pharmaceutical companies and maintain autonomy from them.
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We recognize that initiatives like this can quickly move in different directions – it could peter out and join the long list of dormant or defunct ALS/MND groups, or it could take off and need to scale up. If the latter occurs, our status as an informal, entirely volunteer entity might need to be rethought, and we might need to pursue 501(c)3 status. We’ll cross that bridge when we get to it.
Why ALS/MND Deliberative?
For a rare disease, ALS/MND has generated a disproportionate number of organizations, websites, forums, blogs, and social media content. Many have a short shelf life. Many observers argue that the ALS/MND community is far too fragmented. So why add yet another site devoted to an already crowded ALS/MND playing field?
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We’re here to fill a gap – namely, a space for deliberation. We hope that that commitment to deliberation will help reduce the fragmentation in the ALS/MND space.
The ALS/MND ecosystem is dominated by people and organizations telling us what to think, what to advocate, and what to do. Transparency in decision-making is generally low. High quality, open, public dialogue is scarce. ALS/MND discourse on social media has been unhealthy and at times toxic, and at any rate is designed for soundbites, not for longer-form analysis. With a few exceptions, our formal ALS/MND organizations are generally not welcoming places for those of us who insist on raising difficult questions, challenge received wisdom, or play a devil’s advocate. Raising questions in the patient advocacy world is often viewed as breaking rank. In a war against a fatal disease, breaking rank can be treated as treason. In consequence, a lot of PALS raising legitimate questions and concerns have been made to feel unwelcome.
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The desire for a united patient voice in the face of a killer disease is completely understandable. But groupthink is rarely a recipe for good policy, and frequently leads very smart people to make bad decisions. We think embracing diverse viewpoints and welcoming thoughtful debates will better serve PALS in the long run.
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Therefore, we want to be a home for all who wish to hold reasoned discussions on all things ALS/MND. We also want to be a think-tank where hard and even taboo topics are raised – the issues that organizations that can’t afford to lose supporters or donors are afraid to touch. Because we don’t need your money and don’t care who we upset or offend, we’re happy to touch the third rails.
We also aspire to be a place where clarity can be provided on the many complex and confusing issues surrounding ALS/MND research, policies, and care.
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Finally, we want to be a useful historical archive – a source of institutional memory -- for the ALS/MND community. So many people living with ALS/MND have written or posted invaluable observations and ideas over the years, in forums and on social media, but most of it is lost over time. We intend the website to be a place where important discussions in the community live on and are easily accessed years later. This quest for more institutional memory is especially important because of the nature of the disease we have and the rapid turnover of PALS activists.
Our mission
Our mission is to build and expand a culture of tolerance, dialogue, ethics, and evidence-based deliberation within the ALS/MND community and its organizations.
Our vision
Our vision is to serve as the most trusted site for thoughtful debate and deliberation on ALS/MND matters, and as a sanctuary for people living with ALS/MND, especially the newly diagnosed. We want this to be the home for the best writing and thinking on ALS/MND issues.
Our principles
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Science and evidence-based policies. We are committed to evidence-based discourse on every aspect of ALS/MND policy, care services, and research.
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Deliberation and debate. We prize open discourse and space for thoughtful debate as the best route to good policies, programs, and science.
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Results-based metrics. We are focused on promoting and supporting policies, research, and research design that stand the best chance of speedily delivering effective therapies to slow, stop, or prevent ALS/MND. We understand that reasonable people can differ on how best to advance this principle and will host debates on it. We are uninterested in symbolic victories and performative politics as measures of success.
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Ethics. We are committed to the principle that ALS/MND policy, caregiving, resource allocation and research should always account for and be held accountable for ethical considerations.
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Obligations to future generations. We embrace the position that resource allocation and policies today must be designed not just to serve the immediate demands of PALS today but also future generations of PALS.
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Global obligations. We embrace the position that funding, policies, and research priorities generated in the US – by the US government, US research entities, and ALS non-profits – should serve not just Americans with ALS/MND but the global community of PALS.
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Obligations to wider society. We embrace the goal of advancing the interests of PALS, but are also committed to wider concerns to ensure the most effective, cost-effective, and fair use of taxpayer money.
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Constructive criticism. Criticism and scrutiny of the many public, private, and non-profit institutions involved in the ALS/MND space are essential, but must be done constructively, with an eye toward improving their performance, not undercutting their legitimacy.
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Keeping tough conversations civil. In our deliberations, debates, and disagreements, we commit to showing one another empathy and grace, always remembering the very difficult private burden each person living with this disease is shouldering.
Rules of the Road
We want to create a space for open discussion and deliberation, but not one without basic parameters for what constitutes acceptable and unacceptable communications and positions.
This is a moderated site, and all posts – both original analyses and responses – are vetted and approved by the moderators. We reserve the right decline publication of material that uses inflammatory language, makes unwarranted claims, distorts evidence, engages in personal attacks, is replete with logical fallacies, or relies on emotional appeals rather than reasoned analysis.
This is primarily a venue for people living with ALS/MND to generate and share extended essays, analyses, interviews, and responses, but we welcome contributions from caregivers, former caregivers, public health professionals, academics, patient advocates, and others.
How we self govern
We are an informal group, and our governance is currently informal as well. Our core group of co-founders meets periodically to seek consensus on content and any other matters related to the site. If ALS/MND-D grows into something larger, we’ll adapt with more formal governance roles and rules. For now, we’re happy to keep it simple and informal.
Our definition of a “Person Living with ALS” (PALS)
Our definition of a Person Living with ALS (PALS) is broad and multi-generational. It includes people diagnosed with ALS/MND at all stages of the disease, and people who are currently asymptomatic but who are or could be carriers of the genetic mutation that causes ALS/MND in the genetic variant of the disease (about 10% of ALS case are genetic, and can be passed along within families; the other 90% of cases are “sporadic” -- causes currently unknown).
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We also include in our definition of a person living with ALS/MND the many millions of people globally who are not currently diagnosed with ALS but who will be at some point in their lives – perhaps next year, perhaps in 20 or 50 years. The policies and research priorities that we advocate today will have enormous impact on these future generations of PALS. As a basic ethical principle, we are committed to including their well-being and best interests in any discussion about current ALS/MND research and public policies. Nothing about us without them!
Our Volunteers
This group serves as an informal board to periodically meet to discuss and review content, edit, consider new proposals, and review site policies. We intend to expand this group as word of the ALS/MND Deliberative spreads. As of mid-2024, the core group includes:
Finances
We currently have no expenses beyond what we pay out of pocket for the website domain, and hence no budget and no 990 form. If that changes, we will be fully transparent about where funds come from and how they are spent.
Contact Info
We want to hear from you! To send us responses or comments on posted entries, to send a proposal for an original essay or analysis to be posted on the site, to propose a topic for us to explore, or for general or media inquiries, please e-mail us at alsmnddeliberative@gmail.com