I joined ALSA after my diagnosis in September 2004 and benefited from their publications, loan closet, support groups, seminars, funding for research, etc. Recently I also joined the ALS division of MDA (Muscular Dystrophy Association). Both organizations do outstanding work in support of the ALS community. MDA, the older group, reaches millions for research and provides an excellent range of publications. ALSA is particularly good in raising funds through their annual walks in cities all over the U.S. Both groups are dedicated to finding a cure for ALS and for providing the latest information to the community. I sense, however, that the two organizations seem to treat the other as a rival rather than a partner. Without naming names, I have noted that when one of the two groups hosts an important event, such as a research seminar, no attempt is made to circulate the news of that event to the other organization. One of the two organizations, in its briefing materials, did not include the other group as a local resource in the D.C. area. I am saddened by this and I can only reiterate the feelings of the boy who famously asked, “Say it ain’t so, Joe.”
Comments are welcome.
About Me
- Tony Wallace
- Arlington, Virginia, United States
- I am a 67 year old PALS living in Arlington, VA. I am a retired Foreign Service Officer, Consultant, Adjunct Professor and Book Seller.
4 comments:
Tony,
I suppose many of us reach the same worrisome opinion as you have.
I spent almost a year on the ALSA virtual community promoting cooperation and collaboration at the national level. All I accomplished was to be invited off the virtual community for using an ALSA resource to criticize it and its structure.
The saving grace is the cooperation, collaboration and some effort to avoid costly duplication at local levels is found routinely because there isn't this pervasive "we are better than the other guys," mentality and patients are the primary focus.
At the national level we have two major organizations purporting to represent our best interests. One touts that its strength is that is covers many neuromuscular diseases , many of which may have much in common, both in terms of cause and possible curative therapies. This national organization, MDA, has a much bigger national public footprint and its own management and research overhead structure. The other, ALSA, touts is strength and supposed superiority as being the only national organization exclusively dedicated to ALS. It has a much smaller national footprint but its local chapters have very effective awareness, fund raising and patient care services.
Wouldn't it be in the best interests of those these national organizations purport to serve to reach some collaborative and cooperative arrangements where the strengths of each can be focused on PALS and CALS rather than this otherwise unproductive, duplicative, national competition that requires expensive overhead?
It seems that we die off so quickly as a group that makes is difficult to become an effective national constituency, is the same weakness that allows these national organizations resist changes that could be a major advance to the benefit of PALS and CALS. It seems that pride rather than principle is winning out and we are powerless to change things.
Chuck Hummer
gamboachuck@yahoo.com
Unfortunately this isn't new.
I offer one thought that may be a little unconventional, but I believe
in it strongly.
It's not an either/or allegiance. Regardless of how we choose to give
of our time and money, most of us can dig just a little deeper and
support more than one organization in some way. In doing so, it kind of
de-fuses a little of the competition. It forces not-for-profits to
focus on their delivery rather than winning a competition over donors.
It also could force them to find niches where they can excel rather than
feel that they need to "me-too" the other organizations constantly in
order to win a person's support from the other guy. Unlike voting in
primaries, we don't get just one vote for organizations that can help
people deal with ALS or that can help find the cure. We can get
involved with several and help them understand where they can excel.
My philosophy is that generosity breeds more generosity and we don't
have a fixed sum game when it comes to charity.
All that said... I'm also a great believer in checking out form 990s and
spending a little time with not-for-profits as an in-the-trenches
volunteer to see who is effective at delivering services and results.
ALSA and MDA have vastly different business models and each has
considerable strengths and considerable weaknesses. No not-for-profit
is perfect. Often we give in to the human temptation to completely
reject one from our support when we have found an imperfection that hits
our hot button rather than standing back and looking at the bigger
picture.
My 2 cents fwtw.
rknt50c@comcast.net
Kudos on your comments. They were just what I was looking for. The two orgs should complement each other. Why can't they work together for a common cause. It shouldn't be about competition. I understand that donations are the lifeblood of the organizations so we should support both of them.
I too have noticed the rivalry between the two groups. I have been involved with ALS patients since 1980,having worked with a wonderful Doc who was the ALS physician in our local MDA clinic. We also did all the EMG's in the area.
Back in 1980 one could not even mention an ALS Association when dealing with ALS patients in the MDA clinics. My area still does not have an ALS clinic, the nearest one is 180 miles away.
In the past five years they have started the ALS Association walks here, (the MDA clinic also has an ALS walk one month before the Walk to d'feet ALS). Why can't they combine the walks to make it one large one instead of having just a few people in each? (the number I have seen ranges from 50-150 people in my area)
Some doctors in the area prefer to send patients to the ALS Clinic, miles away and then some are OK with the MDA clinic.
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