I was able to see Dr. Jenkins and her assistant Chow on Monday, 4/6/26. It was an uplifting and encouraging visit. Both of these individuals are wonderfully compassionate and share their knowledge and support freely. I was given a full examination, then we moved into intake for the SPG302 EAP. Barring any anomalies in my blood work or ECG, I…

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Hi Randi, I just saw Dr Jenkins yesterday. I really like her. The communication is great. I feel like they connect more with the individual there. Chow has also been great facilitating things for me. Technically I live in California but I spend at least half my time in Mexico. They help me work with that while being in their program. I did…

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G and I retired in late 2016 but that just meant more projects and a busier schedule. It also meant that we got to spend a lot of quality time together and we will never regret that. We have great memories of that chapter and revisit those adventures quite often. Keeping our mental health balanced (challenging) helps with our physical health.…

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I’ve been working while living with ALS for over 3 years.  I believe that having slow progression ALS and a positive attitude have helped me tremendously. I’m also one of the fortunate pALS that on QALSody. Mental, physical, and emotional health is important, and we need to do our best to stay healthy in all ways!

What bits of wisdom… Read more

The process of applying for disability and Medicare is actually simplified when you have ALS. ALS is one of the conditions in which you are not required to wait several months for benefits. Also, you are automatically qualified for medicare with disability for ALS. Just give Social Security a call.

It’s been interesting for us. When we started our ALS journey, these groups were very helpful. We found answers to our question and got some good advice. Now that I have progressed pretty far, we are answering questions and providing advice.

How is the process for applying for Medicare? I will be starting that soon and it is intimidating! I’m terrified of my upcoming financial situation. I never thought I would have to stop working at my age.

I have insurance through my employer. It’s a self-pay program managed by AETNA. There is a rate that my insurance pays for the drug that is discounted. When I called the pharmacy to find out what I would be required to pay it was several thousand dollars more than what my insurance is charged. I spoke to several people at the pharmacy and…

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Thanks Susan! Everything is helping our community!

Good morning Rando,

How did your appointment go yesterday? What are your thoughts on the trial?

Amanda

Hi Rando,

You are an early patient. For acceptance into SPG302 EAP, you need to be able to swallow pills and your FVC score should be greater than 35%. I am sure you will be able to be started with this EAP soon. All the best. Please keep us posted here.

With all the luck,

NJ Guy

My wife and I live in rural Southern Oregon, with only a single neurologist available in our Iocal area. I was diagnosed on 9/16/25 after many months of troubling symptoms. I’m now receiving multidisciplinary care in Portland, OR at the Providence ALS Clinic. I’ve been chasing clinical trials with no success until now. I have an appointment…

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As I’ve shared, I’m on QALSody. My current regimen is dosing every 28 days. My medical team is recommending a 21-day regimen. My insurance will not pay for the additional 3 treatments per year.  

However, others have been able to get the 21-day regimen on Medicare. My medical team is also recommending that I go on disability.

Are you on… Read more

I have taken it for 3 wks through the EAP. Too early to tell.. I am a slow progressor. UMNd ALs so we will see. Dr Rowe in Australia thought possible slowing in slow progressors but no affects on fast progressors. I have not had any side affects .

Thank you all for responding.

Actually this drug looked very promising since it was helping for the growth of dendrites and resulted into new synapses. But, looks like not many good results are being reported.

Can anyone comment on this if there is any early access to the outcome of this EAP?

Thanks,

NJ Guy

Never of it before — but now I will be watching for updates! Hurrah! Finally, something that helps us verbalize in real time, not a few-minute delay for typing or for the other person to read what was typed out. Very interesting, for sure!…

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They have been a life saver for me! I joined Facebook when my Mom passed from ALS FTD in 2008 and finding the ALS community there was life changing. Since then, I have started several groups and have moderated several others. I love connecting people with resources and being plugged in to so many research organizations, support groups and…

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Hi Peter,

Have you connected with our End the Legacy community? We have members from around the world who have various mutations.

a. Please subscribe(at bottom of home page) to receive emails about virtual meetings, webinars and our upcoming conference. https://www.endthelegacy.org/

b. YouTube …

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Does anyone know about a new device called Alter Ego? Through non-invasive electrodes, it captures what the brain wants to type or say and sends the information to a computer.

With the Eleven Labs platform, for example, there would be an almost instant ability to speak.

https://www.media.mit.edu/projects/alterego/overview/

Hi Amanda, I am in the same situation. Especialy the Facebook groups
about ALS research are quite often used and I am an active member. I
would love to see more interaction with the scientific world as a
patient, as I belife, that we as patients coud support more, than “just”
asking for fundings to support the research. 2025 was a project…

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Hi, I have new information about the my ATXN2 gen repeat expansion. As it looks like, I am the only ALS patient affected by the ATXN2 gen repeat expansion 31/29 in a large database of over 13’000 ALS patients. Does anybody has information why the different repeats have so many different surviving expectation?

Thanks and best regards…

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I’m a member of several groups on Facebook that are for pALS with the SOD1 mutation or on the drug QALSody. I find a great deal of information about ongoing research, clinical trials, and how other SOD1 pALS work through challenges.  I find that this is a great support system in addition to the ALS News Today community. 

Do you find social… Read more

At ALS News Today, we want to stay relevant and beneficial for our ALS community. ALS News Today provides information on mental health, ALS research, and general information about ALS.

What information would you like more of on the ALS News Today Forums?

What information is the most beneficial?

I said what I said because when Riluteck was first offered to me they said it would add about 5 months of life. Over the years they now realize it more like 2-3 months. I’m so sorry.

I realize when you’re talking an expected remaining life span as most experience, 2-3 months is a long time.

29 years ago it was fairly new. Plus it was the…

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I take riluzole and Radicava. I was lucky to find a non profit that has given me grants the last couple of years. Plus upon the first month of every year my insurance catastrophic portion kicks in. So my out of pocket cost that should of been $8,000.00 went down to about $1,250.00 for the entire year.

My insurance company paid right at…

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I have shared my story before here.

30 years of guilt. I couldn’t understand why, and I still don’t why. I rarely share my journey outside family members any more.

When I got the first DX in June 1997 with ALS I shared because of the unknown. I wanted to tell my family and friends that I love them.

With in 5 years I was already being made fun of,…

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Can I ask what commercial insurance you are on and how you’re getting the $18k out of pocket figure?

I’m on Soc Sec disability (retired early) and recently applied for Medicare. The challenge with Medicare is that one won’t be eligible anymore for the Biogen copay program which effectively zeroes out the Qalsody drug cost for me after the…

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I think it’s a holdover from that year we spent in lockdown during covid, but besides keeping my immunizations up to date, I carry (and use) hand sanitizer and always have a clean face mask tucked in my purse — just in case.

From what I read on the internet, he is a pain management doctor. Does typical steroid injections in the spine (and other joints — like knee) to alleviate pain.

May I ask you njguy, what are you seeking treatment for?

Hi all,

Thank you so much for your replies. Definitely will be cautious and am doing as much research as possible. Have you heard of Dr. Bradley Cubitt in Texas? He also is trained by Dr. Prodromos to administer this exosome treatment as well… Please let me know if you know anything about this doctor as well.

Thanks,

NJ Guy

Here in the U.S., we’re still in the cold and flu season. For me, this means I continue being cautious when it comes to my health (this was the case long before COVID-19).

In addition to getting my flu shot – and now staying up to date with COVID-19 boosters — I take measures to boost my immune system, avoid others who might be sick, and… Read more

I agree with Amanda — be cautious about doing this.

Various stem cell treatments have been around as long as I’ve been living with ALS, 16 years. I’ve never read where this was successful. Only that treatments are very expensive and have to be repeated because the effects wear off (the stem cells die).

Yes, Amanda… more protein is a good thing 😉

I found that taking smaller bites of food helps with swallowing. Also, training myself (and my dining companions) not to expect me to eat and talk at the same time. 🙂

KathleenAnn, you are so right about the heavy RR doors. I’ve even had to use my rollator to help me wedge the door open. I’ve been nearly squished by more than a few … hahaha

oooh, a carbon rollator — you are so lucky, I really love their sleek design! ……..keep moving well, my friend!

I totally agree about handicapped doors not working. And even when they do work, once you get inside, the restrooms have heavy doors without auto openings. It makes it difficult to enter without getting hit in the back by the door. I have noticed this even in the new NYS thruway rest stops.

The carbon rollator I have is perfect for me. It…

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I was encouraged by the dietician at the ALS Clinic to increase my protein intake and reduce sugar intake. As my throat muscles are becoming a little weaker so I’ve added protein shakes. I do eat a lot of fruit, and fresh vegetables.

I live near Naples and from what I’ve heard about this person and treatment, I would be very cautious of this being a scam. The best thing to do is find medical peer reviewed research articles that show detailed data. There are so many people out there willing to take advantage of vulnerable populations by selling false hope.

Looks like this is very early in the study. Dr. Prodromos usually deals with orthopedic treatments, so this is different for him. In this study, only 18 patients total with a mixture of neurological diseases (ALS, Kennedy Disease, Congenital Myasthenic Syndrome, or Lewy Body Dementia) had 32 AlloEx Exosome treatments to assess safety,…

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Hi all,

I have come across Dr. Prodromos’ exosome intranasal treatment for ALS. Attached is his website: https://www.ismoc.net/ Dr. Prodromos has conducted a clinical trial (NCT07105371) and some ALS patients have claimed to have regained mobility in their limbs after a few treatments. The treatments are to be done every month and the…

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I have joined several online ALS groups — if I’m feeling lonely or have a question, I log in and join the ongoing discussions.

Cystic Fibrosis columnist, Lara Govendo, recently wrote about the importance of having a community while living with a chronic disease. Check it out here. We who live with ALS certainly relate.

Here’s an excerpt: “That’s why making friends in our communities is crucial to our overall well-being. It’s validating to see others fighting the… Read more