For years now. I have not been able to understand why ALSA, MDA, ALS TDI and a handful of other support/research groups have not been able to get along and coordinate their support and "primarily" research. They each collect their own money, have their own fundraisers create their own research centers and, while this seems fine, at least you would expect them all to share information. This is not the case. Recently I found out that ALS TDI one of the leading research centers for specifically ALS in the world has not received one penny from ALSA. Being that ALSA is one of the #1 fund raiser in the United States, if not second with MDA, I find it hard to believe that none of their resources are directed toward ALS TDI.
As a patient. I find this extremely frustrating and using examples from other diseases, I don't really understand the reasoning or politics behind it. Cancer research centers cross communicate, Parkinson's, Alzheimer's and multiple sclerosis groups seem to share at least basic knowledge of trials and drug candidates. I also became aware of a Facebook group which has the sole mission of boycotting ALSA, National due to its inability to use funds for "significant" research. Don't get me wrong, ALSA on the local level is extremely helpful and useful when it comes to patient and caregiver support, but of course they're not involved with research. Our family receives tremendous support from our local Rocky Mountains Chapter.
This all became very apparent to me in the preceding months before our CBS special, Live for the Moment (LF TM), which aired on January 28, 2010. In order to make the most out of the show and its slot on primetime Thursday night CBS television, I began working very hard to make ALS TDI, ALSA and MDA aware of it. I was very successful in getting buy-in from ALS TDI and their full support to put the show's logo on their website. ALSA national also was very eager to promote the show and had a write up and logo on their front page as well. It was a little bit more difficult with MDA due to the way it was handled between their representative and the CBS. (A long story). In the many writeups and comments from the ALS community that followed, ALSA was criticized for not buying airtime just after the show as a public awareness opportunity and a chance to point people to websites where they could donate time and money.
I'm not quite sure what can be done in order to encourage the primary groups to engage one another more frequently and at a greater depth. The willingness also doesn't go both ways equally. What I mean is, ALS TDI is extremely willing to work with ALSA and MDA, and in the case of MDA, they have the Augie's Quest initiative, which does donate considerable funds to ALS TDI in Boston, Massachusetts. However, ALSA seems to be an organization that is closed and operating primarily within its own boundaries. If this is not the case, I have failed to find evidence of it on their prep site.
Some groups focus on caregiver assistance and equipment for patients along with the fundraisers and awareness events to raise money for the use activities. Other groups focus solely on therapeutics such as the Therapy Development Institute. MDA and ALSA are organizations that try to do both and it would be far more effective to funnel all funding into, one highly capable organization. Maybe the funding would reach such a level that the government would take notice and match or contribute additional funds. There are multiple facets to this philosophy such as, if multiple centers are doing the research, then you have multiple approaches and different thought processes going on. But no one seems to have enough money to make headway on their own. Anyway, maybe if all of the research groups were to be housed under one roof and pooled all of the money, then the multiple philosophies and drug approaches would be combined with uninhibited communication between the groups.
Yeah, like that would ever happen in my lifetime…
I would love to hear your comments and read any thoughts you have on this topic.
Well said, but your special was about ALS not ALSA. ALSA needs to remind itself that war rages on. This war is not about them, it is about ALS. Like any war you are surrounded by those that are dying and those that are trying. Someone has to take charge and lead! You don't send out a questionnaire asking questions like, what shall we do this year? The ALS community needs to see leadership with decisions that have merit.
ReplyDeletehttp://alsspreadtheword.blogspot.com/2011/01/enough-basta-assez.html
ReplyDelete"Organizations need to focus on ALS as the enemy (and not each other)."
I also think that those in a position to help support the cause need to be willing to donate to more than one organization. This isn't a "pick one and only one" proposition. This should not be Hatfield vs McCoy research and patient support and advocacy and awareness. We need to raise the level of support overall.
As long as organizations are constantly looking over their shoulders at each other rather than working together to complement each other and keep their eyes on ALS, energy will be wasted and the execution will continue to be poor.
I probably shouldn't get started on the awareness topic, but...
As long as awareness efforts are focused on organizations and not ALS itself, ALS will continue to be the best kept secret fatal disease on earth. Pffft.
Hey Rog,
ReplyDeletethanks so much for your comments. I know you've thought long and hard about this and hope there is a solution. Thanks for clarifying the specifics about the playing field. We need to figure out a way to quickly treat this disease with effective therapies now. A cure will come years down the road. PALS don't have years to wait. thanks for your timely and poignant blog.
Mike