Although recruitment is restricted to the US..this will give interesting information.
SLS-005 contains the active ingredient trehalose, a low molecular weight disaccharide (0.342 kDa) that has been shown to penetrate muscle and cross the blood brain barrier.8 No
On August 17, 2022 at 1 PM CDT, NAF is hosting a PrepRare Webinar featuring Dr. David Biondi, a Seelos Therapeutics physician. He will provide an overview of the STRIDES study which is currently open to patient recruitment in the United States. The overview will include background information on the Investigational drug, SLS-005, patient eligibility criteria, study center locations, and other important study design elements. You can register here: us02web.zoom.us/meeting/reg...
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My husband has trehalose every day, has done since Sunvox recommended it a few years back. I think it has definitely helped. 8 years since he was 'diagnosed' aged 35 and doing well - touch wood.
The clinical trial referred to Trehalose being administered intravenously.
āSeelos Therapeutics Announces FDA Acceptance of Investigational New Drug Application and Grant of Fast Track Designation for SLS-005 (IV Trehalose) for the Treatment of Spinocerebellar Ataxiaā
I hope to remain optimistic and open to advances but with a healthy dose of realism. As I recall what Sunvox previously advocated was unattainable for most of us. Patience is a virtue and I shall watch this space from a safe distance to see how applicable it is for us!
Oh yeah he has a real regime going on, I have just plucked a few simple and affordable bits out. At the end of the day I feel some action is better than none and a cure via actual science is very uikely to happen soon enough for my husband.....maybe for my son, IF he has it.....
š Iām trying to cut down on sugarPersonally..I would have more faith after clinical trials had been done on an intravenous form.
The overall results are variable..but it shows enough promise to make it worth trying intravenously..but it may have the most beneficial effect on a specific type of ataxia...PrepRARE Webinar: STRIDES Study for SCA 3 ā A Clinical Research Study of an Investigational New Drug to Treat Spinocerebellar Ataxia
From the new CSO, Dr Lauren Moore at NAF-"This webinar is intended for patients, family, and caregivers. It will be led by a representative from the pharmaceutical company, Seelos Therapeutics. He will be discussing Seelosā Phase 2 clinical trial of a drug called Trehalose that is beginning to enroll patients with SCA3 in the US and in Europe this year. The goal of this presentation is to discuss what the drug is, who is eligible for the study, and how to enroll to become a clinical trial participant. If you or someone you know with SCA3 might be interested in participating in a clinical trial for a potential new therapy, we highly recommend that you attend if you can. The webinar will be recorded and uploaded to the NAF youtube page afterwards so you can still view it later even if you arenāt able to watch it live."
I think itās doubtful that Trehalose would be offered to people diagnosed with Idiopathic Cerebellar Ataxia.
There were high hopes for Trehalose, but it shows most promise for those people diagnosed with SCA3
Update on Biohaven Clinical Trial
May 23, 2022
Biohaven Pharmaceuticals reported top-line results of its phase 3 clinical trial of troriluzole, an investigational drug for patients with SCA. While we share in your disappointment that the drug did not meet its primary endpoint in the overall SCA population, there is much more to this story than just that headline. Further analysis by SCA type suggests a positive treatment effect in patients with SCA3, the most common form of SCA. There was also a reduction in the relative risk of falls in troriluzole-treated patients with all types of SCA included in the trial versus the placebo group.
We are pleased that Biohaven will be presenting this data to the FDA as soon as possible. āThe f-SARA change in the SCA3 troriluzole treated group is compelling,ā stated Dr. Susan Perlman, Director of Ataxia Clinic and Neurogenetics Clinical Trials at the David Geffen School of Medicine at UCLA. āGiven the excellent safety profile of troriluzole, and the fact that there are no approved treatment options for patients with this devastating neurodegenerative disorder, I am thrilled for my patients that Biohaven is planning to engage with the FDA to potentially move this program forward.ā
Please keep in mind, that symptoms of Cerebellar Ataxia, can be the same, or similar, for many of us, having the misfortune of having this disorder; however, not all the CAUSES of the symptoms are the same - therefore, medications may not be applicable the same for all sufferers of this particular Ataxia! My case is an example of what I am stating! My neurosurgeon, Harvard educated Dr. Robert White, highly respected by his colleagues, and, at the time of my diagnosis, the Chief of Neurosurgery, at Case Western Reserve University, in Cleveland, Ohio, told me and my wife that I had an extremely rare Cerebellar Ataxia case! In my case, artery malformation has attached itself to the roots of the cranial nerves, at the entrance of the nerves, to the brainstem ( Cerebellum ). The pressure on these nerves, causes my Cerebellar Ataxia. The artery problem, after having an MRI, was discovered when a thin tube was inserted into my artery, at the groin level, and was threaded up, to the brain, a type of endoscopy! Dr. White stated that, because of the sensitive location, this was an inoperable condition. Dr. White thought, that, perhaps, my condition is a birth defect! So, what the Doctorās prescribed was a combination of blood pressure medicines, that keep my blood pressure low! This was discovered, when I was in my 30ās, when my Ataxia symptoms were getting worse! As a child, and young adult, I was very uncoordinated, and had some difficulty, with walking. As a child, I had been diagnosed, with non-paralytic polio ( before the vaccine ), and Dr.ās had previously blamed that for my Ataxia-type problems. Over the years, Iāve had some mild symptoms, of the Cerebellar Ataxia. Then, about 10 years ago, I had trouble freezing, with walking, and stiffness, resting tremor, and some other symptoms, that resulted, in a Parkinsonās Disease diagnosis, about 6 years ago. I am now 75. So, now you know my story. I hadnāt planned on being so āverboseā, but thought that seeing the whole picture this way, would show how so many factors, can contribute to symptoms, particularly when it involves the human brain. Good luck with your treatment. I hope all goes well for you!
Thank you so much for sharing that personal info. My history is quite the opposite: always active, well-co-ordinated, played basketball, volleyball, etc. Quick reflexes, fearless. My ataxia snuck up on me late in life, no one knows how or why. My cancer was at age 29, chemo via pills for 18 months. I am now 76. No other physical ailments except heart valve regurgitation. Shattered my knee at age 61 and recovered nicely getting new knee, 4 years later Ataxia symptoms surfaced. Trauma? I am now on BP meds, first time for any meds.
It is frustrating..when basic symptoms seem the same....but ataxias arenāt all the same. Thereās not just one faulty gene that causes ataxia, and any treatment is likely to be specific to that gene. In this case, Trehalose was tested against several genetic types, and SCA3 gave the most promise.
Iām Idiopathic myself, so I share your frustration. Just this morning I signed consent for my whole Genome to be screened .. Ask your Neurologist about this...it gives the best chance of an answer when basic testing fails.
But..the downside is..Iām unlikely to get a quick answer.. At best it could take a year to get results..assuming a link is found.
Thanks for that info.... the odd thing is I have been tested and I do have one faulty gene sequence for Friedrich's Ataxia, but the genetic experts claim you need two to actually inherit that gene. So, once again, I am an outlier. No one is still alive in my family.
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Death in the family and the Trehalose discussion.
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