Do you guys believe...

[ThroughThatValley]

...that one day doctors will ever say to a patient: "don't worry, it's only ALS".
Or is this disease continue to plague and despair the human kind for hundreds of years to come?

 

[Nikki J]

I believe that there will at least be treatment to turn it into a chronic illness for everyone in the next 15-30 years. I think within ten years there will be prevention for the most common genetic forms. I think that will be even sooner for sod1

I hope my timelines are pessimistic

I have seen incredible advances in the knowledge and research in ALS and other neurodegenerative diseases but there is a way to go still.

Those of us who can can help by participating in biomarker studies while living and planning donation of brain and spinal cord to ALS research after. CALS and other loved ones might look into being healthy controls for these studies. If people are financially able to donate do due diligence and make sure your money is being used wisely

 

[beauty4everyone]

I never knew or heard of anyone with ALS. Now I'm aware of three nearby, including me. I truly believe there's an environmental influence. Hopefully, we'll discover a cause that can be eliminated. May it be so! Until then, eventually, a treatment will be discovered. May it be soon! Until then, hold fast. May blessings abound. B.

 

[dldugan]

ALS to me seems to be a condition with many causes. If you see a person with a cast on their leg you know they have a broken leg, but there are a myriad of ways this could have occurred. The myriad of things that could cause this condition, ALS, seem to make it difficult to focus on a cure.

 

[KarenNWendyn]

I think Nikki’s assessment is spot on. The time frame remains an unknown.

One of the problems is that ALS probably encompasses a group of diseases with different causes but a common clinical presentation. A “cure”, if it is ever found, may vary from person to person depending on cause. In the meantime, there have been advances in slowing down disease progression.

I’m not sure we’ll ever hear, “Don’t worry, it’s only ALS”.

I’m encouraged with advances that have been made in controlling HIV/ AIDS. In the 1980s when it first manifested, it was an automatic death sentence. Since then, there are treatments that keep it more or less in check. There are now even reports of two patients who have been “cured”. I realize that’s a very different situation than ALS, but it illustrates the evolution of medical technological advances.

 

[diagnosed2016]

I hope so. I’m terrified it will take my children from me, and I will spend the next 30-50 years dreading if/which one has the gene mutation.

 

[Nikki J]

Another parallel with HIV some ALS specialists believe there are protective genetic factors that some people carry so they never get ALS even if they carry a mutation like c9 or sod1 as they found with HIV.

They are finding modifiers when they do genetic analysis on some FALS. In c9 there is a protective one against FTD. There is also a nasty one that if have it and c9 you die in under a year after onset. My doctors think there are ones that slow progression too. Whether these cross over to other forms will take time even once they can be applied to current C9 people.

 

[Clearwater AL]

As I have written before my wife has been diagnosed with the onset of
Alzheimers.

Some real significant discoveries are happening by the day concerning
this disease.

I have always believed the discoveries with Alzheimers (which now
has more research being done then ever before) will link a discovery
to ALS.

ALS is still a rare disease. Alzheimers no longer is.

Our help just may come from Alzheimers discoveries, treatment
and even a cure.

PS. I also believe there is far more intense urgent research studying
on Alzheimers than ALS because of the sheer numbers and our aging
Baby Boomer population.

Lets hope they discover a relationship. I think they will.

 

[MarieLaure]

Yes. No doubt one day there will be effective treatment and even one day a cure. Amazing progress have been made for so many terrifying deadly diseases already and teams are working on it.
I don’t dare ask the important question: when?

 

[ThroughThatValley]

Labs are in no hurry. There went frenzy for AIDS because as HIV began its war againt men, everyone and their uncle had a Black Death scenario fit and money was not the issue. Labs gathered their informations and States payed every mean and need for them to try and find a cure. ALS is not contagious and considered rare if not orphan. No one but the sick is in a hurry and hearing the clock as it ticks down. With ALS Labs are going to business up and cover for law issues before they contemplate passing on to the market. For me, I'm hopeless. The only one I have is that my grandchidren won't have to face the ugly monstres like cancer and MND praying not to be stricken and checking for symptoms that are fate sealers.

 

[Nikki J]

I disagree that researchers do not feel the urgency. I have met a number of them on a one to one basis and have attended 3 of the International MNDA Symposia. I agree that the money hasn’t been there like it was for HIV. That is better now but it isn’t enough yet.

There is a quote from an ALS specialist testifying before Congress. ALS is not incurable. It is underfunded.

 

[Kristina1]

I totally agree with Nikki about the 15-30 years. My husband is an oncology drug discovery researcher for Novartis Pharma. His job is to use complex data mining algorithms and molecular models in the search for cancer treatments. The results he gets then turn into preclinical studies which eventually can go to clinical trials, so he's at that very first step in the process. We had read an intriguing article on research done at Harvard on TDP-43 gene expression in ALS and the researcher had been able to turn off a particular gene or something like that with really promising results in preclinical studies. I asked my husband how long something like that would take to go from where it is now to being an FDA approved treatment (assuming funding and good results in clinical trials). And he said about 15 years.

There is so much exciting research for ALS going on right now but it's mostly in earlier stages still.

 

[jethro]

Maybe he thought: "Lucky you! It is ALS, nof FALS"...

 

[KimT]

I think there will be hopeful and effective treatment to make ALS a chronic condition rather than a death sentence. Sort of like insulin for diabetes. It doesn't mean people won't die from ALS but it will be treatable. Cancer is treatable but, as we all know, different types of cancer are still usually fatal because of the timing of diagnosis (pancreatic, for example.) I think, possibly, if there were a way to identify markers earlier, there would more likely a way to slow down progression.

That's why I think gene blocking for FALS will be the first major breakthrough.....and I hope it's sooner than others predict.

I do think research for ALS is underfunded as relates to finding effective treatment and a cure.

 

[Ken15]

This may be overly optimistic, but I think the continued evolution of CRISPR as utilized on more common, but related, motor neuron diseases (i.e., Alzheimer's and Parkinson's) will lead to a significant breakthrough for ALS patients within the next 5-7 years. There is already some work being done on ALS C9ORF72; see here: https://alsnewstoday.com/2018/03/08/crispr-cas9-gene-editing-reveals-potential-therapeutic-targets-als/

Truthfully, my optimism probably comes from a sense of urgency. My PALS has the C9 mutant gene. We have 4 adult children, one of whom is an Iraq War veteran; and seven (soon to be eight) grand children. Each has a 50% chance of having the C9 gene.

As we all know, a therapy and/or cure cannot come too early.

Ken