June 10, 2019 at 11:14 pm #12328AmandaKeymaster
Over the past couple on months I’ve read several articles about how the Ice Bucket Challenge raised awareness and funds. These funds helped to expand on treatment and research. I was grateful that many of my friends took to the social media challenge and participated in honor of my family. Out of all the articles I’ve read, I think that this one best describes the far reaching impact of the Ice Bucket Challenge https://alsnewstoday.com/2019/06/10/ice-bucket-challenge-dramatically-affected-als-fight/. I know still need a cure, but thanks to efforts like this one, we are getting closer and closer.
June 11, 2019 at 1:54 am #12329Jean-Pierre Le RouzicParticipant
The outcome of the Ice Bucket in terms of research is minuscule. Prize4Life which had a sensible approach, stopped funding research last year, they understood the problem is not that more money is needed, the problem is that ALS research is not focused, on contrary it is fragmented.
The last breakthrough in ALS was the finding of the C9orf72 gene. What has been done since which is not marginal? And it was found in 2011 so the IBC has nothing to do with its finding.
I am not a US citizen, but I think that a minimum of planning like what DARPA is doing, is necessary. If there was a principal project manager like those that the DARPA recruits, someone like Virginia Lee or Brian Kaspar then all the weird things that ALS scientists did and are still doing, would never have happened. ALSA could have done that, it did not.
Just a reminder of things that still stall the ALS research:
* Scientists spent many years (from 1993 to 2008) on ALS animal models based on SOD1, before switching to TDP-43. SOD1, not only is a gene when 95% of cases are sporadic, but it is a quite rare gene in ALS (2% of all cases). TDP-43 aggregations was shown, as early a 2009, to be a consequence of stressed cells , not a cause of ALS. So why are scientists spending decades making animal models after artificial diseases they invented, which we know are NOT ALS?
* Astonishingly scientists were and still are using mice to model ALS. There are around 50 ALS mice models today. But <i>the prefrontal cortex (PFC), is much less developed in rodents than in primates</i>. Rodents lack the direct cortico–motor neuron projections that support fine control of forelimb movements. Many of the drugs used to treat CNS disorders exert their effects via neurotransmitter and neuromodulatory systems, and many of these systems differ between primates and rodents.
* Why are scientists spending times on old topics, after spending 15 years on the stupid concept that SOD1 was an explanaotry model for sporadic ALS (they are still wildly interested in SOD1, in 2018 they published 561 papers!), they are since 2006 obsessed by TDP-43 but less so, too modern perhaps, in 2018 they published 317 papers on it? On the more recent (2011) topic of C9orf72 they have only produced 210 papers in 2018! Why are people still funding SOD1 research?
Why don’t scientists move to engineered adult neurogenesis through glia-to-neuron conversion as a few scientists had already done? At their pace they will need centuries…
 Eran Perlson and Erika Holzbaur, 2009
 Lemon, R.N. Descending pathways in motor control. Annu. Rev. Neurosci. 195–218 (2008).
June 11, 2019 at 11:46 am #12337Dagmar MunnKeymaster
I agree that the Ice-Bucket Challenge brought much needed visibility to what at the time was dismal funding and awareness of ALS. But there were mixed results and many lessons to be learned from this marketing phenomena.
– Social media was an excellent platform to use. The visual of ice water and opportunity for individuals to showcase themselves fed into the viral results.
– Some individuals/groups donated to ALS organizations other than ALS Assoc. In fact, the ALS Assoc. was late to the game in claiming ownership of the activity and how to use the donated funds.
– A missed opportunity the following year: ALS Assoc. tried to replicate the Ice-Bucket “thrill” but failed to catch the public’s attention. Other “knock-off” campaigns tried to go viral, but didn’t. (Hot peppers, A Day of Silence, etc.) No one since has created the same fever and interest as the buckets did…. a sorely missed opportunity as ALS faded from public view.
– Jean-Pierre is correct that although ALS Assoc. and other organizations point to increased research activities and published papers, the question is: what are they researching? I have to add my own disappointment that good money was spent to produce: “Does having ALS cause depression?” and “Newly diagnosed ALS patients have trouble sleeping.”
– And yes, we need to move beyond animal models. Human cells react differently to drugs/treatments than those of fish and mice. Not to mention creating an industry of ALS-mice breeders!
In my opinion the ALS Assoc. should stick to what they do best and have created: a vast network of care clinics, support groups, equipment loan closets and care coordinators that directly serve and support patients & families.
And maybe ALS patients need to become more aggressive and assertive about demanding (yes, demanding) attention. This recent article about a group staging a protest caught my eye:
I’d be interested to learn the thoughts of other forum members on this issue.
June 11, 2019 at 12:10 pm #12338AmandaKeymaster
I have to say that any attention brought to the cause, especially at that time was a good thing.
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