ALS News Today Forums | John Ceriotti | Activity https://alsnewstoday.com/forums/members/johnc/activity/ Activity feed for John Ceriotti. Thu, 16 Apr 2026 01:09:44 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 0084f0c3239c17bac58054999a84877e John Ceriotti replied to the discussion Taking multiple ALS medications in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/taking-multiple-als-medications/#post-24915 Wed, 29 Nov 2023 02:52:36 -0600 Reply to Taking multiple ALS medications

Why wasn’t she encouraging? I would say that she does not know the drug Tofersen and its benefits. She sounds like a Debbie Downer.

How did the loading doses work out for your husband?

I hope well!

I believe in the drug and with my other daily supplements I truly believe my life has improved and been extended!

Good luck Sandy…please keep posting…

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]]> 5ef71a2d6647244d562ab1baa271ccac John Ceriotti replied to the discussion FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/fda-approves-tofersen-now-qalsody-as-treatment-for-sod1-als/#post-24914 Wed, 29 Nov 2023 02:43:33 -0600 Reply to FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS

Dr Timothy Miller and Dr Robert Bucelli (both helped create the drug) have a two days a week Tofersen clinic at Washington University Medical Center in St. Louis.

I have been in the original trial since Dec 2020 and after 32 doses in the Extended Access portion of the trial every 4 weeks I feel so good with 7/9 maintained or improving markers…

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]]> 3a9ad9a1151a921718c7ec66506ba636 John Ceriotti replied to the discussion Taking multiple ALS medications in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/taking-multiple-als-medications/#post-24549 Wed, 13 Sep 2023 01:02:12 -0500 Reply to Taking multiple ALS medications

Sandy

i was diagnosed June 2020 and was in the original Tofersen/Qualsody closed study and have had access to the drug since May 2021 or roughly 29 doses… LP every four weeks

There is no hype. It works at least for me as I have actually improved in many areas with some good hard physical therapy twice a week.

Even after abdominal surgery in… Read more

]]> d98c2717c7340ffc9adf2b6523c22c19 John Ceriotti replied to the discussion Is anyone getting the 4th shot/booster? in the forum COVID-19 and ALS https://alsnewstoday.com/forums/forums/topic/is-anyone-getting-the-4th-shot-booster/#post-24548 Wed, 13 Sep 2023 00:51:16 -0500 Reply to Is anyone getting the 4th shot/booster?

No 4th booster—-picking the science over the “voodoo” again in 2023!

Nothing here in St Louis—-just initial discussions at local and state levels—-hopefully not to lock us down again or mandating mask wearing.

 

 

]]> 35f2c44129e6468bf1637eb4f6816b7d John Ceriotti and Amanda are now connected https://alsnewstoday.com/forums/activity/p/18081/ Tue, 10 Jan 2023 16:08:47 -0600 0 c9a889b208615ad5e98306efee3e9bb0 John Ceriotti replied to the discussion Toferson in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/toferson-2/#post-23286 Sat, 31 Dec 2022 17:49:04 -0600 Reply to Toferson

Tina

Any supplements as I do take (7) to help with body health!

My wife who is an RN-BSN did a bunch of research 2 1/2 years ago when I was diagnosed and found a good amount of info concerning what supplements showed any type of positive or non-harmful results.

]]> 2719e536a3c224ae593ab0b975f8404d John Ceriotti and Dagmar are now connected https://alsnewstoday.com/forums/activity/p/17991/ Wed, 28 Dec 2022 22:46:20 -0600 0 eaa3fc0e7938245ebb6c3f3bbb1d56a3 John Ceriotti replied to the discussion Toferson in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/toferson-2/#post-23274 Wed, 28 Dec 2022 22:37:26 -0600 Reply to Toferson

Amanda

I started as one of the last participants in the “closed” portion of the study and then was allowed on the extended access or open access portion of the study.  I just received my 20th dose on Dec. 13th.  Myself and my wife (an RN) are very happy with the results of the Tofersen drug.  20 doses ago (one every 4 weeks via Lumbar… Read more

]]> 751defd0788134886312294e51338bdb John Ceriotti replied to the discussion Toferson in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/toferson-2/#post-23275 Tue, 27 Dec 2022 22:51:06 -0600 Reply to Toferson

Tina

Just to assist although the question was to Les…I am in StLouis and being treated at Washington University Medical Center where the creator of the drug Dr. Timothy Miller is the Chair of the department with his PI Dr Robert Bucelli who is Vice Chair!!

]]> 7cf1fbffb737d8219c742cd20ec21cf6 John Ceriotti replied to the discussion Have you had physical therapy sessions for your ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/have-you-had-physical-therapy-sessions-for-your-als/#post-22279 Fri, 08 Jul 2022 22:42:05 -0500 Reply to Have you had physical therapy sessions for your ALS?

I strongly believe and will say remaining cautiously optimistic that the ALS physicians are actually discussing with me muscle tone, muscle strength, etc…with the advent and creation of Toferson.  I have had 14 doses on the Extended Access study and read hard data thru the Munex Test is showing cautiously optimistic results.  I am not looking… Read more

]]> 46923dd740f9422fa3ae701ecab7907e John Ceriotti replied to the discussion Have you had physical therapy sessions for your ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/have-you-had-physical-therapy-sessions-for-your-als/#post-22262 Thu, 07 Jul 2022 19:33:33 -0500 Reply to Have you had physical therapy sessions for your ALS?

I have been doing exercises on my own… Not consistently but I have been doing exercise says on my own. I am meeting with the PTS next week at the Washington University Oerthwein center… And my occupational therapist is going to attend and both of the investigational doctors whom I work with on the Toferson study are both excited to hear the… Read more

]]> c657b294dc5919fbc0477195d79b4729 John Ceriotti replied to the discussion Let’s discuss the potential ALS treatment Tofersen (B11B067) in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/lets-discuss-the-potential-als-treatment-tofersen-b11b067/#post-22179 Mon, 20 Jun 2022 14:35:52 -0500 Reply to Let’s discuss the potential ALS treatment Tofersen (B11B067)

I participated in the closed portion of the study for six months.  Then I was allowed to participate in the open label extension and have been now for 13 doses or approx 1 year.  Open label gets you the actual medicine, Toferson, and so that is good.

I am cautiously optimistic with the results and subjectively feel better, feel more… Read more

]]> 2b1e3b4a5bfdf4fd79bafed4fc6f7c9a John Ceriotti replied to the discussion What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/what-is-or-has-been-the-biggest-adjustment-for-you-in-living-with-als/#post-22175 Sun, 19 Jun 2022 20:15:43 -0500 Reply to What is, or has been the biggest adjustment for you in living with ALS?

Lynn

I found one on Amazon actually and it worked great for about 4 months.  In fact I started sleeping in it and have been sleeping in it now for over 13 months.  The challenge that makes me hesitate to fully endorse the chair is the fact that I have had to obtain two (2) new wired controllers for the heated-vibrating controls.  It does… Read more

]]> ac749cd4159677af6a9a4ed057d3e2f9 John Ceriotti posted a new activity comment https://alsnewstoday.com/forums/activity/p/16441/#acomment-16448 Fri, 17 Jun 2022 13:40:03 -0500 Dagmar…yes my I have the familial ALS with the SOD1 “mutant gene”…dang mutants!! Anyway yes…start a new topic on TOFERSON…it is helping me! Thanks for the forums…awesome to share with everyone PALS!!

In reply to - John Ceriotti became a registered member ]]> 638aa2d15736327e49459f9dcd2421d5 John Ceriotti posted a new activity comment https://alsnewstoday.com/forums/activity/p/16441/#acomment-16446 Thu, 16 Jun 2022 21:47:21 -0500 Thank you Dagmar. I did reply to the “Adjustment” topic earlier.

I do want to discuss more about the National and Regional Chapters of ALS Assoc. as I do not believe they do an even average job of marketing and creating brand awareness at a local or national level for our cause. I received an email at the end of May indicating it was… Read more

In reply to - John Ceriotti became a registered member ]]> fca897341d6e1342253d385d50a12526 John Ceriotti replied to the discussion What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/what-is-or-has-been-the-biggest-adjustment-for-you-in-living-with-als/#post-22165 Thu, 16 Jun 2022 20:04:38 -0500 Reply to What is, or has been the biggest adjustment for you in living with ALS?

The biggest challenge living with ALS is time management and wanting to do more than I physically can do for my primary care giver my wife and my family here at home. Also it is adjusting to a new and accommodated position for me with my company and not being able to inform business partners that I have worked with for 14 to 30 years of… Read more

]]> 40a9f89cc51d9a5b24d1a85aa4195304 John Ceriotti became a registered member https://alsnewstoday.com/forums/activity/p/16441/ Thu, 16 Jun 2022 16:25:49 -0500 6