How to Support?

If you're family or friend of a P/CALS, or are personally affected by ALS, you may want to find ways to help. Thank you for that.

Many ALS charities and advocacy groups have come and gone over the years. There have been large embezzlements that you've heard nothing about. Caveat donor.

Writing Checks
First and foremost — if you know a person or family in need, write them a check or buy them something they need. It's just that simple.

Past that, if you're interested in funding ALS research, here is a list of recent HHS ALS grantees, from which you can drill down into the abstracts, sort by state, etc. There should be similar lists available in other countries, by googling, asking around, looking at major universities' sites, etc.

At any academic institution on this list, there is probably more ALS work that isn't funded, and even funded projects frequently have to tap other funds for travel, equipment, staff, etc. There is never enough overall to do all the important work to be done.

In short, any of these institutions would welcome a check earmarked for ALS research. You can also specify that a particular faculty member benefits from your money.

I cannot favor donating to the national aggregators like ALSA and TDI (more on that below). As someone who has been on both sides of the grant-making table, it's like giving Peter some money for Pauline. Talk to Pauline and decide if she's worthy of your investment.

For the "unified" ALSA chapters (that still have ALS Association in their name), revenues go to National, who decides what is spent locally. The separated chapters (who had to file a lawsuit to escape "unification") each have their own budgets. Not all are in ALS United; they may have different names.

I wouldn't give ALSA (National or any of their current chapters) a nickel. From my perspective, they wasted precious resources defending the separation lawsuit, not to mention the dismal record, which I've witnessed from several vantage points, on which the suit was based.

Hard passes also on other national organizations for different reasons aggregated below. No objections to CCALS.

A few key criteria that really apply to most disease-centered charities are:

Rational allocation of resources to program and R&D portfolio, including appropriate pivots as data emerge (NurOwn cheerleading = the current counterexample)

Appropriate ex-ecosystem interaction (FDA demonization won't cure ALS)

Self-positioning as an interconnected resource, not the "only" date/raisin cereal

Record of community collaborations -- creating synergies instead of faux competition -- making appropriate referrals

Openness to "not invented here" innovations and concepts. In other words, is this org a sandbox for founders or a path forward for sufferers?

Regularly seek/leverage content and advice from diverse, shifting constituents, not just "friendlies"

Logic model: How is the mission mapped to patient/caregiver/HCP needs and how are programs mapped to the mission?

Commitment to "moving the needle" on delaying, mitigating, and palliating key effects of the disease. In the case of ALS, these include mobility, respiration, nutrition/ hydration, and communication. Ultimately, the key effect is death, a process that is shamefully neglected by the ALS ecosystem, resulting in unspeakable preventable suffering.

Content that is up to date and fact-driven (not driven by N=1 perceptions)

Operations models that derive from a "P/CALS on the street" context rather than a place of privilege. If you have political connections, personal/org money, text with the experts, etc. it's awesome if you leverage this to lift all boats. Not so much if you wave your connectedness as your creds to whatever you feel like. Freemium models are a concern if/as they sap time/energy (not just $) from the most needy.

Willingness to seek and ability to obtain/remain accountable for funding from non-ecosystem players, including industry, other NFPs, foundations, private donors, endowments, public sector grants and contracts

Engagement/education that transcends inspiration porn and atypically slow progression (in the case of some conditions, miraculous recoveries, but same concept)

Donating (or Selling for Cheap) Equipment
For advanced tech, donate via your local Buy Nothing group, Freecycle, Craigslist, etc. or contact your local neuroscience/assistive technology (AT) program(s). Every state and most major metros have an AT bureau.

At reduced pricing, we sold our ShowerBuddy to a stroke patient, our power wheelchair to an MS patient, and our hospital bed to a group home on behalf of an Alzheimer's patient.

You could donate to a separated chapter even if not in your immediate area, find individual P/CALS to support for pt care/expertise via local support groups, events; donate to a mobility ministry, post "free" equipment or sell at a discount on your local FB Buy Nothing or general group, Craigslist, NextDoor, etc.

Donating Your Organs & Tissues
You can still be cremated or buried however you like, but how about advancing the cause by leaving your brain with the Brain Donor Project?

Depending on where you are, your other organs and tissues may help someone else. You may want to be registered to save someone else that burden at a difficult time.