[John Ceriotti]

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 with an every 6 months MUNEX nerve test!

I had to stop hard physical therapy after some emergency surgery in July this year and am planning a re-Assessment and start up In December and January.

I strongly feel the therapy was a great complement to Tofersen’s treatment and was improving my quads glutes etc to start walking within the year!

Washington University is developing a significant Physical Therapy program targeting PALs overall

I hope everyone can get any or all access to Tofersen…Dr Miller and Dr Bucelli developed a great drug with Biogen.

[John Ceriotti]

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.

 

 

[John Ceriotti]

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 at the world thru rose colored glasses yet when physicians, OT’s and PT’s are discussing whether its maintenance or strengthening along with stretching of the PALS muscle groups…because of our new treatments I remain positive and know I can at minimum live with ALS and it is not a 2 year death sentence.  I hate reading crap like that!  My one physician has a background in muscle related education along with nutrition and neurology…we all can benefit from these new treatments.  I also take a regimen of daily supplements including Creatine, Vitamin E,  B-12, D, Ginseng and even Gingko Biloba.  Some people find some progression slowing with the Tumeric.  My research physicians asked me not to take that while in the Toferson studies…I would think someone has seen something positive if they did not want it to impact the results of the Toferson drug…just my 3 cents worth of opinion.  If PT’s and OT’s and Physicians are seriously discussing actual Physical Therapy programs for PALs, I think we should remain cautiously optimistic and see where it leads us.  There are so many new treatments on the horizon that I 110% believe it will be a combination of therapies on an individual basis that will prolong life and lead to a treatment that actually regenerates the damaged neurons/cells and gives us hope for a longer life if not a full cure.

[John Ceriotti]

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 results. I am hoping they are developing an actual PT program since the Topher son is cautiously optimistically stopping the progression of my disease and actually increasing the strength in some of my limbs…

[John Ceriotti]

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 motivated, and the Drs. read hard data from various physical tests, as well as blood tests, that indicate the medicine is doing what it was designed/created to do.  In fact Dr. Timothy Miller from Washington University here in St Louis, created the drug and recently spoke to a large group of colleagues in Scotland.

You can read about it in one of the last few ALS Today e-newsletters.  My wife and I are positive on the results Toferson has provided, and I continue to want to push my body to do more things.  I remain very cautiously optimistic that Toferson is a very well targeted compound for the familial SOD-1 mutant gene…helping me to this point feel better and believe progression of the ALS has slowed.  I am realistic and not creating a false long-term prognosis for myself as I heavily rely upon the strong academic minds at Washington University.

Hope this helps others!!!

[John Ceriotti]

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 well lifting me up (especially when I was still walking with a walker and now transferring onto my power chair or shower/toilet chair), and is great for sleeping with my BiPap machine.  I just had to get them to send another controller because the heat and vibration aspect of the chair would just come on in the middle of the night.  Kinda crazy.  I believe the best chairs are in the $500-$1,000 range if you want everything.  This model was $409.00 and I bought an extended warranty.  Here is the chair and again overall good for ups and downs and waiting for my engineer son to be at home soon to help replace the necessary side and controller for heat and vibration which is a nice feature.  Here is the model info…good luck!!!!

MAGIC UNION Power Lift Massage Recliner Faux leather Heated Vibration with Remote Controls Wheels for Elderly Catnap Sofa- Brown

[John Ceriotti]

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 my condition. I have told a few confidentially and ask for them to keep it to themselves.
One last challenge would just be not having the ability to just go to the bathroom or just go to the store or just let the dog out or take the dog for a walk… It does get a little frustrating but after two years since diagnosis and now for 13 months receiving the research drug Toferson, the open label extension has provided me with a significant reduction in any progression of the disease so I feel like and can do many more tasks while being much more motivated to do so!!

[John Ceriotti]

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 updates!!

Stay positive…do not let others get you down!!!

[John Ceriotti]

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 July, I have recovered well, and hopefully within the next three or four weeks will be back to the heart Physical Therapy

I also take Riluzole two times per day

The Toferson works…That is my belief here at Washington University in St. Louis… Which has the clinic up and running for a few months ever since the accelerated approval!

Good luck!

 

[John Ceriotti]

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.

[John Ceriotti]

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 Puncture) I was unable to lift my right arm above my head and continued to lose strength in my lower extremities.  I am very pleased with the results to date and actually started physical therapy at the Washington University Orthwein Center Sept 26th.  My results have been good to very good with regaining strength and the ability to perform many more physical things without having to tremendously focus as before the doses.  I do things physically without thought just as I did prior to my diagnosis.  I am still not walking but continue to gain more and more strength across all body parts.  In fact, my breathing capacity test increased to 48% from 38% over a 3 month period and tested on Nov. 13th or so.  my 27 year old son who lives out of town is just in awe and what I can do …like transfer from my chair to a PT mat, or from my chair to a toilet/shower chair or even at night when I transfer myself from my chair to my recliner without any assistance from others.  I feel stronger than I did 2 years ago.  Really I do! I am very pleased with the results and will continue to go to PT 2X per week looking for some more tangible results in the next 3 months…targeting the 6 month mark or so to be able to walk on my own power using a walker to start!  Get the drug , I believe it is worth the monthly LP until they come up with a preferred delivery method.  Email me with any other thoughts or questions…[email protected]

[John Ceriotti]

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!!