May 13, 2022 at 1:51 am #21903AmandaKeymaster
ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our number 1 wish) what type of research do you think should be focused on?
The ALS Association supports a wide breadth of specific fields of study that are critical to advancing ALS research. (ALS Association website)
· Assistive Technology.
· Clinical Studies.
· Cognitive Studies.
· Disease Mechanisms.
· Disease Models.
· Drug Development.
· Environmental Factors.
Can you think of other areas that are instrumental to ALS research or key to improving living with ALS? Have you participated in any research and how has that impacted you and your thoughts on research?
May 17, 2022 at 11:23 am #21949Dagmar MunnKeymaster
I think research should be continued in the areas of physical therapy, therapeutic exercise, and movement training methods that have been successful in helping patients with MS, Parkinson’s, stroke, etc.
It seems that this topic of research has dropped off the map over the last few years. Surely much can be learned from the progress made in other rare diseases.
May 17, 2022 at 2:49 pm #21951BillParticipant
Seems the things that get researched are strictly things that can be monetized. I’m with Dagmar on research of exercise and it’s affect on disease progression. Another is nutrition and type of diet. In clinic , I hear physical therapists give vague guidance. I’ve been for a couple sessions and soon realize many of them don’t understand. ALS. I’ve talked to the nutritional therapists and they are helpful on coping with dietary challenges but have no information as to whether any specific dietary changes affect progression.
To me it’s frustrating that thousands of us go to clinic or neurologists and have data measured on our progression but it is not used to understand whether anything we do changes our progression. It would take money to develop protocol to gather data about us and to evaluate whether exercise level and types of diets make a difference. Again, things drug companies can sell get the money.
May 17, 2022 at 6:05 pm #21954Jeff DerbyParticipant
I believe research into how we can extend a person’s ability to breathe after the muscles are too weak. Equipment, drug treatments that can improve a person’s quality of life over having the standard tracheotomy. As the research for a cure continues, weak arms, legs, will not kill us but unable to breathe will, so if we can find better options for people to live longer lives they can be around for the day a cure is found.
May 18, 2022 at 2:27 am #21957Jean-Pierre Le RouzicParticipant
I completely agree with the previous comments:
– Nutrition is for me the most important aspect as ALS patients need more calories and protein intake than healthy people as shown by Kasarskis and al. in 2014. Plus half of ALS patients have insulin resistance as Alzheimer patients, it can’t be a random coincidence.
– Muscle wasting is nearly ignored by research (~6% of publications) while this is the characteristics which gave its name to ALS (Amyotrophic Sclerosis). I guess that the cellular response to stress plays an important part here.
– An extension of previous point is that I feel that it hurts research to present ALS as a “Motor Neuron Disease”. Many nerve and cellular studies tell that ALS strikes all the body, but if you are a young scientist it is unwise to take this career path, only scientists in sports or nutrition do that kind of studies without career risks, for others it is frown upon because you know “ALS is a Motor Neuron Disease”.
– There is nearly no research on managing the disease, for example in stroke patients there use Pacemakers to stimulate the laryngeal reflex.
Currently I am preparing a large revision of my book on the state of ALS research. It will elaborate on two points:
* One is the failure (Arimoclomol and Biogen/Ionis genetic therapies) or relative success (AMX0035) of recent drugs trials and what it teaches.
* What is NOT studied in ALS research.
May 19, 2022 at 3:06 pm #21974Judy WegerParticipant
Research on familial disease this will lead to help with those who are sporadic
May 19, 2022 at 3:16 pm #21976JohnWParticipant
Hello, For those that may want to understand more about the disease progression, the ALS therapeutic Development Institute has a program called Precision Medicine Program which is mainly a bio marker study they conduct by gathering fluids (blood,csf). But one of the benefits for me has been to monitor by range of motion vs. my self assessed ALSFRS score. I should also mention that AlsTdi ships actigraph trackers you wear on wrists And ankles to do range of motion exercises which you conduct at various times. At the end of the week I mail the trackers back to them and they upload the tracer data so I can see it on my portal They also provide me with results of the many tests the do on my blood which I give to my neurologist.
Hope this is helpful!
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