Suramin study

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

Moderator: ModeratorBill

achatterjee0527
Posts: 2
Joined: Thu Apr 21, 2016 3:07 am

Suramin study

Postby achatterjee0527 » Fri Apr 22, 2016 12:20 am

Hello everyone,
I have been working with Dr. Robert Naviaux from school of medicine, University of California, San Diego to raise funding for Suramin trial for autistic kids. This study has been very promising based on initial human trial results (a paper will be published later the year on the results of the study) : every kid who got the single dose of suramin showed significant improvement in speech and/or reduced autistic symptoms before they went back to the original state after 5 weeks. Before the human trial, Dr. Naviaux and his colleagues conducted the study on mice. More about this study can be found here: http://www.psychiatryadvisor.com/autism ... le/420072/ and https://clinicaltrials.gov/ct2/show/NCT02508259

We need to raise funding for this study to complete the clinical trial. Following four studies need to be done:

Study #1—Complete, 9 months from start to finish, 10 subjects, 18 months from start to publication; $700,000
Study #2—Planning, 30-40 subjects, 1 year from start to finish, 18-22 months from start to publication: $1 million
Study #3—Planning, 30-40 subjects, 1 year from start to finish, 18-22 months from start to publication: $1 million
Study #4 (The FDA Registrational, multicenter trial)—Planning, 100-150 subjects at 5-7 centers, 1.5-2 years from start to finish, $5-7 million (about $1 million per center)

I am looking for suggestion/opinion on how to make progress on the funding. Please share your inputs.
Thanks,
Ari Chatterjee.
Father of a 3.5 years old kid on ASD spectrum.

Kristen55
Posts: 2
Joined: Sun May 14, 2017 8:31 pm

Re: Suramin study

Postby Kristen55 » Sun May 14, 2017 8:58 pm

A friend of mine traveled to San Diego and met with Dr. Naviaux. The human trial was extremely successful. Of the nonverbal children who received Suramin, they all started using words. The children who were somewhat verbal became conversational. After reading your post, I was wondering if you ever got any feedback as for ideas for raising money. The only thing holding him back is funding. My friend reached out to Autism Speaks, who funded his first study, but they said all their money for the year has already been allocated and they would look at his application in 2018. Not very promising. I heard Dr. Naxiaux's human study will be published very soon. Once it's out, it may be easier to get funding. Perhaps sending the publication to the media for coverage? It has to be something big. Local fundraisers are not going to come close to the amount of money needed. Any ideas??

FatherOf2
Posts: 1662
Joined: Mon Mar 11, 2013 1:37 am

Re: Suramin study

Postby FatherOf2 » Sat May 27, 2017 12:06 pm

The Suramin study results are out: https://health.ucsd.edu/news/releases/Pages/2017-05-26-century-old-drug-potential-new-approach-to-autism.aspx Parent reports are here: http://www.sandiegouniontribune.com/business/biotech/sd-me-autism-parents-20170525-story.html Basically, 5 parents who received Suramin reported great improvements. Kids who didn't talk in years started talking. Those, who talked, started using more complex sentences. More social interactions, better eye contact. The gains peaked 3 weeks after the single dose IV injection and disappeared completely in about 4-6 weeks. The parents reported that it was the best treatment they ever tried, but they didn't say what they have tried. 4 out 5 kids who received Suramin had regressive autism, with normal or even advanced development until 2-3 years of age, when the regression happened. The kid who was non-regressive seemed to benefit least. The fact that the study selectively picked regressive autism patients, who benefited most, makes me think that these patients may have Landau-Kleffner syndrome. It would be very interesting to know if these patients had any EEG abnormalities, especially in sleep, because LKS patients see enormous gains from steroids, which normalize EEG. I suspect that Suramin action is very similar to that of steroids, but the latter are easier to take and FDA approved. Whether Suramin will ever become FDA approved remains to be seen. It needs to get financial support from big pharma, which will probably not be interested in financing a 100yo drug because of patent expiration. If there is a continuation of the Suramin study, I would advise to divide patients into two groups: those receiving a Suramin injection and those receiving a steroid injection. I bet the results would be the same.

Kristen55
Posts: 2
Joined: Sun May 14, 2017 8:31 pm

Re: Suramin study

Postby Kristen55 » Mon May 29, 2017 9:10 am

Thank you for your reply. My son does, in fact have regressive autism and an abnormal EEG, but doesn't have LKS. He did a trial of IV steroids with Dr. Riviello (NYC) and we did see some minor improvements in speech, but nothing dramatic enough to warrant the continued use of steroids. My belief is that some of the puzzle pieces are finally coming together, and although there are many causes, many of those causes disrupt the same pathways, meaning that one treatment may work for many causes. This was shown in Autism Speaks' MSSNG research as well. This is very promising, but without funding, it just seems like a desperate waiting game. :(


Return to “Autism Support/Education/Technology”