Please Support Dr. Naviaux's Research

[RL_sparky]

I wanted to give this it's own thread. Recently it was brought to our attention that Dr. Naviaux's lab is running out of money. He wants it known that he needs financial support or his lab will shutter if it does not receive funding. Currently Dr. Naviaux is spending 90% of his time looking for money for his lab and this is taking away from valuable time he could be doing research.

Dr. Naviaux feels he HAS cracked the code here. He feels that anti-purinergic therapy is a CURE

Some had asked about doing a crowd funding campaign. This is what Dr. Naviaux had to say about that:

Thank you for your support. Anyone can “crowd source” their support for our lab at: http://naviauxlab.ucsd.edu/support/
All they need to do is pull out their credit card and make a donation to any of three different projects.
There are strict rules about using commercial crowd-sourcing software at the university. These rules are only recently being expanded to permit some types of software, but not others. It turns out to be more of a regulated space than you might imagine; easy for non-academics, but harder for professors working at the university.



Please consider donating to Dr. Naviaux's research at the following link:

http://naviauxlab.ucsd.edu/support/

 

[Cort]

I wanted to give this it's own thread. Recently it was brought to our attention that Dr. Naviaux's lab is running out of money. He wants it known that he needs financial support or his lab or it will shutter if it does not receive funding. Currently Dr. Naviaux is spending 90% of his time looking for money for his lab and this is taking away from valuable time he could be doing research.

Some had asked about doing a crowd funding campaign. This is what Dr. Naviaux had to say about that:

Thank you for your support. Anyone can “crowd so...urce” their support for our lab at: http://naviauxlab.ucsd.edu/support/
All they need to do is pull out their credit card and make a donation to any of three different projects.
There are strict rules about using commercial crowd-sourcing software at the university. These rules are only recently being expanded to permit some types of software, but not others. It turns out to be more of a regulated space than you might imagine; easy for non-academics, but harder for professors working at the university.



Please consider donating to Dr. Naviaux's research at the following link:

http://naviauxlab.ucsd.edu/support/

What most people don't know about Dr. Naviaux is that he is funded almost entirely by private donations. Perhaps, not surprisingly, given it's inherent conservatism it's been been hard if not impossible to get NIH grants.

I was able to sit in during the working group sessions at Stanford. All I can say about Naviaux is that he's incredible sharp, he appears to have a photographic memory and he was a real leader in those sessions. A very impressive guy....

 

[perrier]

What most people don't know about Dr. Naviaux is that he is funded almost entirely by private donations. Perhaps, not surprisingly, given it's inherent conservatism it's been been hard if not impossible to get NIH grants.

I was able to sit in during the working group sessions at Stanford. All I can say about Naviaux is that he's incredible sharp, he appears to have a photographic memory and he was a real leader in those sessions. A very impressive guy....

Have you any further insights about the potential of Suramin, from these sessions. ( I mean aside from the public statement in the interview)

 

[Cort]

Have you any further insights about the potential of Suramin, from these sessions. ( I mean aside from the public statement in the interview)

No, just what I know from the study he did and the remarks from the parents in the autism study. Parent after parent came forward and described some real progress. The kids certainly weren't well but they did make progress both on cognitive tests and anecdotally which is apparently rare...

He would like to try Suramin in ME/CFS. It's not a perfect drug but it may be turning off the cell danger response Naviaux believes is present. It would be horrible if the powers that be didn't allow Naviaux to continue his work. He's very impressive.

https://health.ucsd.edu/news/topics/Suramin-Autism/Pages/Parent-Statements.aspx

We noticed a new engagement and focus in trying new things. He learned to count from 100 to 200 for the first time. We noticed much new language and spontaneous use of normal full sentences to express his needs and wants. For example, when my husband was starting to leave on a trip out of town, my son wrapped his arms around him and said, "Today, I only want to be with you." By about five weeks after the infusion, most of these changes had gone back the way he was before.

Immediately after the infusion, a kind of inner cheerfulness started to come out. When we were walking back to the car, he was holding my hand. He started giggling and looked up at me and said, "I just don't know why I'm so happy."

On weekends when we took him to a neighborhood park before the infusion, he would sit off to the side of the playground doing his own thing. After the infusion, new social skills and language started bursting out. He started joining in games of tag. At school, he started imitating the other kids playing chase and tag on the playground.

On a Saturday about a week after the infusion, his dad was making a snack in the kitchen. My son went in and said very clearly the first sentence of his life. He looked at his dad and said, "I want to eat chips." His appetite improved and he started asking to try new foods. By three weeks after the infusion, he was starting to show tender emotions that were so endearing. He started to sit quietly on the couch with his dad while watching TV and to gently, almost unconsciously, touch or tap his father tenderly.

 

[NelliePledge]

Some had asked about doing a crowd funding campaign. This is what Dr. Naviaux had to say about that:

Thank you for your support. Anyone can “crowd source” their support for our lab at: http://naviauxlab.ucsd.edu/support/
All they need to do is pull out their credit card and make a donation to any of three different projects.
There are strict rules about using commercial crowd-sourcing software at the university. These rules are only recently being expanded to permit some types of software, but not others. It turns out to be more of a regulated space than you might imagine; easy for non-academics, but harder for professors working at the university.



Please consider donating to Dr. Naviaux's research at the following link:

http://naviauxlab.ucsd.edu/support/

i think what works really well on the IIME approach is that there is project by project information on how much is needed, what for and how much has been raised so far. They are working closely with university scientists. Are there ME charities in the US that could support him on fundraising using the IIME model?

 

[RL_sparky]

I don't think the IIME approach will work in Dr. Naviaux's situation. He needs roughly $70,000 a month just to keep his doors open with a skeleton crew. In regards to the total cost of Suramin drug development, from Phase 1-3 he would need between $20-$30 million. This type of money is beyond what the patient community can raise. That said he needs donations to keep the doors open while he keeps searching for additional funding sources.

 

[NelliePledge]

I don't think the IIME approach will work in Dr. Naviaux's situation. He needs roughly $70,000 a month just to keep his doors open with a skeleton crew. In regards to the total cost of Suramin drug development, from Phase 1-3 he would need between $20-$30 million. This type of money is beyond what the patient community can raise. That said he needs donations to keep the doors open while he keeps searching for additional funding sources.

Yes but he already broke it down into chunks and the initial stages were 400k & 800k I believe. Which seem feasible using the IIME approach and Unrest raised over 100k in a couple of weeks.

 

[Jesse2233]

Yes if presented in the right at least a substantial chunk of the funds needed could be raised

 

[RL_sparky]

Yes but he already broke it down into chunks and the initial stages were 400k & 800k I believe. Which seem feasible using the IIME approach and Unrest raised over 100k in a couple of weeks.

However it comes about he needs the money soon. Maybe one of the organizations will take the lead. Personally I donated and have asked others to also. But you make good points!

 

[RL_sparky]

@NelliePledge , @Jo Best

Being U.S. based I'm not fully versed in IIME. I love the conference they put on but beyond that I really need your help. It seems as IIME is the only real group doing anything good in the UK? So being the only game in town and having a corrupt government that mistreats the patients helps drive donations?

I'm trying to square the success with IIME's fundraising with say the group of dedicated and highly motivated patients here in the U.S. who tried to raise awareness in raising donations for work Dr. Ian Lipkin is doing for us at Columbia.

What makes IIME successful in raising money beyond doing "project by project information on how much is needed, what for and how much has been raised so far".

Just curious if there is anything I'm missing that might help me better understand.

Thanks

 

[Jo Best]

Hi @RL_sparky, IIME started their annual conference in 2006, but I think UK patients started the trend for crowdfunding specific research projects when IIME had announced their proposal to establish a Centre of Excellence for ME (2010) and had outlined the foundation study for the proposed translational biomedical research programme (2011) and crowdfunding followed in other countries, such as for the Norwegian rituximab trial and OMF and Microbe Discovery Project, and the U.S. based organisations have raised much more money-wise - millions of dollars in a shorter time frame compared with £720,000 raised for the IIME research over about six years, so I think there are good models already to follow in U.S. Dr. Naviaux is on the OMF Scientific Advisory Board.

 

[RL_sparky]

Hi Jo, Thank you for your response. My health is taking a turn for the worse at the moment so I appreciate your response but I'm going to bow out of the conversation till I feel better.

 

[Jo Best]

Hi Jo, Thank you for your response. My health is taking a turn for the worse at the moment so I appreciate your response but I'm going to bow out of the conversation till I feel better.

You're welcome and hope you feel better soon, no need to reply.

Update from UK today just for ref. http://www.investinme.org/ce-news-1709-04.shtml