Multi-Chapter lawsuit against ALSA National

[lgelb]

This is probably the best account of the issue that's not behind a paywall, and includes the Chapters' full Complaint as well as the ALSA statement in response.

Essentially, National wants all the local Chapters to "federate" and close. 18 chapters have agreed. 14 chapters have filed a suit seeking to keep that from happening. 2 are not parties to the suit but have not agreed to federation.

When national health organizations take over local Chapters, things generally don't go well in terms of patient support. It would be foolish to believe that the ALSA, with its track record of fundraising over substantive P/CALS services, would be any different, and the Complaint supports a low expectation based on National's previous record in areas not served by Chapters.

Meanwhile, the academic medical centers in which most major ALS clinics are housed are stretched to the bone with acute COVID, post-COVID sequelae, and long COVID, and their attendant consequences such as short staffing, overcrowding, and preventable deaths/disability among people with and without the virus. So maybe not a great time to loot local services and spend down budgets for the dying? Just a thought.

Whether the litigation drags on or there is a settlement, and whichever category your chapter is in, if you're planning to hit them up for help or stuff, I'd do it soon. The national Board is right about one thing -- this does divert money from the cause. The problem continues to be, National's cause is not necessarily yours.

 

[Nikki J]

It doesn’t surprise me at all that the Massachusetts ALSA chapter isn’t fighting this. As I have noted before chapter quality and services vary wildly. I recognize some of the chapters fighting this as ones that seem to be good at what they do. National may find that the people who have been supporting their chapters because they help stop.

I hope people whose interests lie in patient support services start channeling their funds towards CCALS which has expanded from their New England base. They are very good at what they do

i will add that the burdens of the clinics are real and another actor has been the need for prior authorizations and appeals for Radicava ORS and Relyvrio. The time they have to spend with forms and phone calls has to come from somewhere

 

[Tomswife]

We have been helped in many important ways by the NY Chapter of ALSA. Everyone does not have the same experience with every ALS non-profit. But NY has been helpful and good to us.
We also have a connection with CCALS and they have been very responsive.
Where would we be without these resources?
I hope the federated structure does not impact ALSA NY negatively.

 

[Tomswife]

Sorry. They were federated and are moving to what they call "unified ". I hope they will be transparent about how donations are utilized, and what rationale will they use to distribute and manage resources across the US?

I know people who want to give locally. It sounds territorial. But they would prefer to donate to a local chapter, rather than national.

 

[Nikki J]

Even before this national took a portion of any chapter donations which I don’t think everyone knew. I don’t remember the percentage 10 or 15 maybe? I hope it doesn’t impact your services but believe your chapter is one of those fighting this so they are not seeing it as a good thing. If people want to give locally to you aside from ccals who I believe are good stewards you have Joan Dancy

 

[lgelb]

The percentage has been 13.6%. The federated chapters are being advised to spend down donated funds before May to avoid the possibility of State Attorneys General intervening on behalf of donors who thought their funds were going to their local chapters since that will no longer be happening.

 

[KimT]

Well, our local chapter couldn't be worse. No help. No suggestions. I've had to be guest speaker twice. I've washed my hands of them. In the beginning my niece made a very large donation to our Chapter but never even received a personal thank you letter.

I know there are very good chapters. It might even be a Florida thing. Everything else is pretty bad down here.

 

[Nikki J]

As I have said before the MA chapter is not great. Mgh works with ccals. It isn’t just a Florida thing Kim.

 

[Clearwater AL]

I have a favorite saying now… “Nothing stays the same anymore.”

I used to get a zip pack from my chapter every month or so. It would
have neat little goodies, wrist bands with “I have ALS and contact
info on the other side, key fobs, refrigerator magnets, and etc. Well,
it’s been a long time since I’ve got one. Now it’s just a news letter.

But… that saying seems to apply to so many other things these days.

 

[Tomswife]

There is a good summary of the unification of ALSA here:

rinewstoday dot com

als-association-chapters-throw-cold-water-on-national-move-to-take-them-over-seize-assets


"The lawsuit, made public Monday, is backed by 14 of the 16 independent ALS Association affiliates that aren’t in the process of winding down and merging with its national headquarters. Eighteen other chapters support the restructuring, according to the complaint. The ALS Association is accused in a lawsuit by more than a dozen chapters of “catastrophic leadership failures.”

The suit in Delaware’s Chancery Court accuses the national organization … of trying to bully the chapters into the consolidation”.

 

[lgelb]

Yes, that is the link I originally posted. They might settle (sometimes suits are filed to induce that, as you know) or it might drag on.

 

[Doing My Best]

This breaks my heart. I have been aware over the past year or so of changes in our local ALSA-San Diego, and it appears we're one of the ones that have already consolidated. I wish they were fighting it. I know several staff members are not happy about it, and care services are already being impacted.

ALSA-SD has been an absolute lifesaver for us from the beginning. They've provided all kinds of assistive devices and equipment, often before we knew we would need it - and then inevitably the need occurred soon after. In other words, great at helping us anticipate. The care services team has been proactive and is well acquainted with us personally, and it's been a bright light in the darkness. But recently they are doing things like having me go somewhere to pick things up, instead of dropping them off at our house. Local staff members are trying really hard to keep up the level of service they're used to providing but it feels like they're working against headwinds from national.

We started a fund in my husband's name with 70% of donations going specifically to the San Diego chapter for local care services and 30% to national for research. We have raised over $50,000 to date from friends and family and have a goal of $100,000. Part of the reason I was comfortable doing this was because I was so confident in great job the local chapter did and we wanted to enable them to help others the same way. If the care services aren't going to be what they have been, I have real reservations about continuing to fundraise. I guess I need to ask some questions. I would hate to have others in the future, our us for as long as we need it, stop getting this invaluable support.

 

[Mary2]

I inquired about what GA ALSA was doing and they are part of the law suit against the restructuring. I have been pleased with GA ALSA. They keep in touch with us by phone and we participate in the virtual group support sessions that they hold. They also hold in person support sessions.