January 14, 2020 at 7:05 am #14237Dagmar MunnKeymaster
When I was diagnosed in 2010, I was told life expectancy was only 2-5 years. But now in 2020, that has been challenged by patients living much longer. In addition, we now know how to identify slow progressors and, how to slow down progression of symptoms.
In fact, the ALS Association updated their “Facts You Should Know” page to include the statement: While the average survival time is three years, about 20 percent of people with ALS live five years, 10 percent will survive 10 years and 5 percent will live 20 years or longer.
Through his Study of ALS Reversals (STAR) project Dr. Bedlack, has identified 45 patients who had been diagnosed with ALS, and now are symptom-free.
That to me, is a significant paradigm shift: one that says, ALS doesn’t always have to be a terminal disease! And I wrote a column about it here: A New Paradigm for the Future of ALS.
Are you aware of the 45 “ALS reversals?” How does that change your understanding of ALS and your own expectations for your (or your pALS’) prognosis?
January 14, 2020 at 4:12 pm #14256Jonathan L MaddockParticipant
I was aware of the possibility of a reversal and the 45 documented cases. It has given me more optimism for a cure, and a general enthusiasm about my own health. IMO new clinical trials are going to take a fast track, leading to a more chronic (non-fatal) condition for many. A short step away from reversals.
I fully believe that this decade will prove a major turning point. God bless to all, and I pray for you to hold on while the miracle is on our doorstep.
January 15, 2020 at 7:12 am #14263AmandaKeymaster
When I visited Dr. Benatar in December, I too was excited about his optimism in regards to finding a way to stop the progression of ALS, possibly identifying biomarkers and preventing the onset. Although he didn’t provide a time frame, he did sound like it was “around the corner.” Of course, that term itself is subjective and not soon enough for pALS. They are in clinical trials or SOD1 and C9 mutations that are targeting stopping the progression. I entered these pre-fALS study because I did not want my younger family members to have worry about getting ALS and I am grateful for all of those pALS and pre-fALS volunteers. I think that you are leading the way to a cure for familial and possibly sporadic ALS!
January 15, 2020 at 10:30 am #14257Douglas K PowellParticipant
Thank you for the insightful information. The last time I visited the ALS Survivor’s website the number was less than 45 – it has grown since I last visited it. This is encouraging and I also like that Dr. Bedlack is still steadfastly conducting research on this group- he is a big advocate of ALS patients.
I just came back from seeing my neurologist at Massachusetts General Hospital in Boston, Ma. and I was told of some very encouraging news on the ALS clinical trial front.
My neurologist <u>believes</u> that a cure for familial ALS is “coming soon”. He is directly involved in most of the ALS trials at Mass. General is on the cutting edge of clinical trials. Although I do not have familial ALS and it will not benefit me directly, it will be a huge step forward and I am sure will benefit the cause for sporadic ALS treatment and cures.
He also told me that the Phase 3 trial of TUDCA in combination with sodium phenylbutyrate is going very well with some statistically significant results. This combination has shown to greatly slow down the progression of ALS. IF all goes well, approval for this drug could be within a year.
So 2020 is off to a promising start! It seems there are more trials and studies than ever before.
January 15, 2020 at 10:31 am #14258BillParticipant
If not 2020 I believe still not too far off. I too have read of the 45. I’m not so impressed with trying to discover what they did. Statistically many of the thousands who have died also did what these few did. I am interested in their genetic study to see what is different about them. Who knows it may lead to understand how some bodies “beat” ALS. I’m in a genetic study and I am very slow. Some pALS hear the 2-5 years diagnosis. I was told 2 years ago at diagnosis by my university ALS neurologist that I could be “decades”. I hope that turns out to be true. With my age, I’m pretty sure I wouldn’t live that long anyway. I am hopeful treatments will slow me even further eventually. Maybe preserve my quality of life. I participate in trials and studies and do what I can to help the research.
January 16, 2020 at 3:59 pm #14274Eric BarnettParticipant
I’m a year into my diagnosis now. I hope the best to everyone!
February 15, 2020 at 1:19 pm #14508AnonymousInactive
I really believe that within the next 5 years there will be a way of stopping or significantly slowing progression.
February 26, 2020 at 10:24 pm #14640Lanelda JonesParticipant
Thank you for the update. My nephew was diagnosed with Sporadic ALS on April 1, 2019. This was a blow to all of us to say the least. We are still getting out feet wet in the research field. I read everything diligently trying to stay abreast of all the newest clinical trials. We’ve been trying to enter him into some of the latest trails but they all seem to be filled. I was not aware of the 45 patients with ALS that are now symptom free; that is wonderful news. I am praying 2020 brings good results from the latest trails and studies. God Bless
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