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Best innovation or advancement for ALS in 2025
There have been many advancements in technology, devices, and treatment options for ALS during the past year. From discoveries that improve diagnosis to genetic analysis.
What do you think the best innovation or advancement for ALS was in 2025?
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6 Replies
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Although we are still miles away from having a cure for ALS, I’d say that the treatment for genetic ALS — Tofersen (Qalsody®) has proven to beffective in slowing down symptoms.
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As someone who has SOD1 ALS taking Qalsody, I wholeheartedly agree. I consider myself so “lucky” and have heard neurologists/ALS specialists call it a home run drug. Hoping we get more of these therapies soon, if not a cure!
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I have CHCHD10 a very rare genetic familia ALS gene. Columbia University and n-Lorem foundation developed an ASO for our family and 10 of us including myself have been receiving lumbar injections for over a year now. I recently received my #6 treatment. The trial we are in is called “Silence ALS”. We are thankful that a non profit developed our trial drug with so few patients. Big pharma would never consider research for such a small group. It is well tolerated with minor side effects such as muscle aches and some get headaches. We know through blood testing our Neurofilament light chain (NfL) protein fragment released from damaged nerve cells and used as a biomarker has been cut more than half. Only time will tell what that does to combat slow or stop progression. We have slow progression and all feel they have not got weaker.
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bill-osullivan,
That is awesome to hear. I’ve been reading about that online. I’m relieved for you and your family.
My family has a long history of ALS. I’ve been on QALSody since July 2023 and my NFLCs are now in the normal range.
I do believe significant process is being made. I also read that they are now doing a trial with QALSody on non SOD1 ALS.
Cheers,
Amanda
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I was diagnosed with the CHCHD10 variant just shy of 2 years ago and suspect my 1st symptoms may have started around 3 years ago. I recently joined the Columbia University “Silence ALS” program (4 months ago) and received #3 treatment a few weeks ago.
I echo everything bill-osullivan has shared. While I have never met Bill (other than on a zoom call), we are related within a large extended single family tree with this very rare familia ALS gene. When I received my official diagnosis, my wife and I cried and then started re-planning our future knowing my fate would be the same as my mother and her sister.
For me, the CHCHD10 research ASO we are taking every 3 months is clearly the best opportunity gift of the year 2025, and offers the biggest possible ray of hope for our extended family and the next generation.
I am also extremely fortunate to be progressing slowly with minor weakness in both arms — lungs and legs not affected (yet). I am quite lucky to have an ALSFRS-R score still at 48. I am now in a strange situation where I no longer know how my future will play out. I’m too early in the ASO program to physically observe a potential benefit. I have been going to the Gym several times a week for the past year with a clipboard. I do careful resistance exercises and have been recording everything. Over the past year, the exercise numbers have unexpectedly remained constant. I am nervously optimistic that with future ASO treatments there is a chance I may receive a bonus and remain constant longer. It would be a total miracle if I detect some reversal and re-gain some arm strength down the road.
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ALS News Today published the Top 10 ALS news stories of 2025 — do you have any favorites? (mine is #3).
https://alsnewstoday.com/news/top-10-als-news-stories-2025/
No. 10 – Qalsody halts disease progression in SOD1-ALS patients
No. 9 – Researcher advocates rethinking ALS treatment strategies
No. 8 – Blood test could diagnose ALS up to 10 years before symptom onset
No. 7 – NP001 data show nearly two-year survival benefit in patient subset
No. 6 – Repurposed veterinary medication prolongs survival in patients
No. 5 – New evidence hints ALS may have autoimmune component
No. 4 – Noninvasive spinal stimulation extends survival in mouse model
No. 3 – High sugar diet plus riluzole linked to slower progression
No. 2 – Geographic link between ALS and MS suggests environmental factors
No. 1 – Actor Eric Dane raises ALS awareness in TV drama
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