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.

Giving time Is precious
Time is a simple gift. Ask what can help. It might be a grocery run, watching a movie on TV together, or holding someone while they cry. If you don't reach out, you'll never know.

Donating your organs & tissues
You can still be cremated or buried however you like, but if you're eligible, how about advancing the cause by leaving your brain with the Brain Donor Project?

For the general public (including some PALS) 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.

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.

Everything else, we gave away.

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.

On to money…
Many ALS charities and advocacy groups have come and gone. There have been large embezzlements that you've heard nothing about. Caveat donor.

Directed giving is often the best
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. If they try to refuse, tell them they can pass it on later or pay it forward. If we all did that, it'd be a better world.

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.

What about all the organizations that say they help P/CALS?
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 current ALSA 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, with the exception of CCALS.

A few warning signs that apply to most disease-centered charities to which you might consider donating are:

• Allocates resources and taking stands based on preferences instead of evidence (NurOwn cheerleading = the current example)
• Demonizes other players (Neither big pharma nor FDA demonization will cure ALS)
• Self-positioning as the "only" organization that does X
• Competes instead of collaborates, failing to refer to other organizations when needed
• Sandbox-for-founders model instead of a path forward for sufferers
• Sources content and advice from "friendlies"instead of a diverse constituent group
• Lack of evident 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.
• Fails to acknowledge that death can go well or badly
• Obsolete content, not frequently revised
• Speaks from a place of privilege instead of a "P/CALS on the street" context. Orgs that have political connections, personal/org money, text with the experts, etc. can help lift all boats. However, too many wave their connectedness, then do whatever they feel like.
• Freemium models, which sap time/energy (not just $) from the most needy
• Substitutes "inspiration porn" for education, highlighting atypically slow progression (or in the case of some conditions, miraculous recoveries)