Thread: Hire a Scientist?

Hi all,
I know that I've seen several cases in the past where a disease has not been considered worthy of research--either due to its affecting only a very small population, or other utilitarian arguments. And in the cases I am thinking of, private citizens have formed coalitions to pool money and hire scientists to research the disease. For the life of me I can't recall the specific diseases, but this is along the same lines: The Wall Street Journal Reports On FDA Approval of Addi and Cassi’s Cyclodextrin Treatment | The Addi and Cassi Fund - Niemann Pick Type C So my question is HOW does one go about doing something like this? The article provided is not quite in line with the cases I am recalling, but states that:

Working with three other families whose children have NP-C disease, they hired a scientist who began writing a request to the FDA for the Hempel children to receive cyclodextrin infusions.

No indication of how they went about that. This is a general question. I do not personally want to hire anyone at this moment. Even brainstorming would be great.

I'm happy to brainstorm. But i wonder what data they have discovered.

Ive seen in the Wallstreet Journal that it's about Niemann-Pick type C, which is a metabolism disease that does something with the cholesterol.

It's genetic as well, which sparks my interest. How much information do you have about this? What kinds of tests has it been subjected to. What is the use of cyclodextrin infusions, as i don't get those.

Is the use of cyclodextrin to delay the metabolism, so that the abberation of the amount of cholesterol can be maintained. Doesn't this also mean that real time measurements of these concentration is the only way to keep this in check?

I'm afraid I know nothing about it. I just picked that article as an example since I don't remember the name of the one I first heard about a few years ago. What I'm thinking is, now that crowd sourcing can fund all kinds of projects, it makes sense that it could fund reach as well. Scientists and web designers take note!

Would be a great idea to talk about certain illnesses and diseases time at a time.. Maybe to provide awareness, and even speculate about a cure..

This is not exactly what I have in mind, but definitely an example of the principle of crowdfunding science: Fund Science and Explore the World with Renowned Researchers - Petridish.org

Guess you would just contact labs (commercial/university) that already do similar things and see if you can give them money to hire extra scientists to do the specific work you want (i.e. set up a fund/grant for a specific research question and advertise it to labs/fellows) (I recall being in a lab where one of the fellows was paid by an outside charity).

Originally Posted by Zwolver

Would be a great idea to talk about certain illnesses and diseases time at a time.. Maybe to provide awareness, and even speculate about a cure..

Not 100% sure what you mean, but if you are saying that it would be a good idea to pick an illness/disease (e.g. one a week or whatever) and discuss it on all levels (genetics/molecular/cellular/histology/clinical/pharmacological/etc) I would certainly be interested to do so.

Originally Posted by SHF

Not 100% sure what you mean, but if you are saying that it would be a good idea to pick an illness/disease (e.g. one a week or whatever) and discuss it on all levels (genetics/molecular/cellular/histology/clinical/pharmacological/etc) I would certainly be interested to do so.

Thanks SHF. As for your comment, Zwolver, I agree with SHF that it would be great to have a book club like setup to discuss a specific topic each week. Specifics could evolve naturally as we see fit (e.g. more/less frequent, more/less in-depth). Not sure if that's what you meant, but would be a great idea anyway.

Yep, thats what i meant.. Not very good in explaining, kinda my downer..

Haha, well your English is better than my Dutch!

Book club sounds good. Any thoughts on best way to do it? As JoshuaL says, don’t want to be too prescriptive. Have you done book club type stuff on the site previously? For example, what’s the best way to choose a topic? How general / specific should we be? For example, I came across a paper (from 1999, and I assume not mainstream thinking in the least) about HIV not necessarily existing and AZT having no basis (see paper below), and it got me thinking about virology in general, about how we confirm a condition is caused by a specific virus, about isolating and identifying viruses, what are the standards and limitations in virology, how certain are they of e.g. ‘The retroviral theory of AIDS’ etc. But if we choose HIV as a topic how strictly should we stick to HIV/AIDS and how much should we go ‘off-topic’ e.g. into general virology etc. I assume the best way is for someone to suggest a topic, someone to second it, or propose another, then just to let in run, somewhat keeping an eye on the initial specific illness, as Zwolver mentioned discussing the state of the field/understanding and what the future may hold given current tech etc. Perhaps we could discuss the topic with no rules other than having to always make sure we answer at least a few standard questions (e.g. 1. Give a brief summary of the state of the field. 2. Give a brief summary of most likely / most promising future treatments / prevention strategies. 3….etc) (not saying these should be the standard questions, just putting them as an example)

(Current Medical Research and Opinion
Vol. 15: Supplement, 1999
A Critical Analysis of the Pharmacology of AZT and its Use in AIDS)

So this is my homework now.. hmm... allright i'll see if i can read it :P..

your started it! lol

I wasn't necessarily suggesting HIV as a first topic, but happy to go with it if you guys are

Might as well! I have the advantage of working at a facility that does HIV research, so I can probably get some good intel. Alright, how bout we start a separate thread for this. First question might be, how do we know that the virus in question is the cause of the disease in question (AIDS). In other words, how was the virus identified and how was it proven to be the cause? That should be plenty to get us started!

Cool. Will have a look into these questions (and others if/when they arise)

Hmm, the answer looks obvious, as it can be, and is actually measured, on the number of T-Cells..

You actually gave me a paper to read, that proved that triphosphorilation of a medication was required to have the HIV stalling effect.. Though it said nothing of the disease itself.. :P.. i'll look for more interesting papers..

Is it obvious? The identification of the virus made based on the number of T cells???

Perhaps this would have been a more suitable paper:

Med Hypotheses. 2004;63(4):597-601.
A critique of the Montagnier evidence for the HIV/AIDS hypothesis.
Papadopulos-Eleopulos E


Mentioned in this paper is that the evidence presented by Montagnier in 1983 was:

“…proof for the existence of HIV are detection of reverse transcriptase activity; the presence of retroviruslike particles in the culture; immunological reactivity between proteins from the culture supernatant which, in sucrose density gradients, banded at the density of 1.16 g/ml (“purified virus”) and antibodies in a patient’s (BRU) serum…”


The original paper of the Montagnier team:
Science. 1983 May 20;220(4599):868-71.
Isolation of a T-lymphotropic retrovirus from a patient at risk for acquired immune deficiency syndrome (AIDS).
Barré-Sinoussi F, Chermann JC, Rey F, Nugeyre MT, Chamaret S, Gruest J, Dauguet C, Axler-Blin C, Vézinet-Brun F, Rouzioux C, Rozenbaum W, Montagnier L.

The original paper by the RC Gallo team:
Science. 1983 May 20;220(4599):865-7.
Isolation of human T-cell leukemia virus in acquired immune deficiency syndrome (AIDS).
Gallo RC, Sarin PS, Gelmann EP, Robert-Guroff M, Richardson E, Kalyanaraman VS, Mann D, Sidhu GD, Stahl RE, Zolla-Pazner S, Leibowitch J, Popovic M.

I'm more familiar with diagnostics, not researching the virus. I'm aware that HIV is an RNA virus, so reverse transcryptase is needed to multiply the virus fragments.

Though, just some wild ideas for identifying the virus. A dyed probe with a known sequence (on the HIV virus) can be added to a blood sample. Then the RNA can be extracted (together with the parts where the probes bound to the RNA). Using a supercentrifuge, and an additional weighted substance to capture the RNA in the thin veil in between. Then simply use blotting, photometry, or electroforesis to identify the probes stuck on the RNA..

Again, diagnostic, but it doesn't require the 2hours extra time from PCR, or some expensive materials like TAQ...

Nice! I haven't been in a lab since college (well, not DOING anything in a lab, at least). I love that there is more than one approach to figure something out.

Originally Posted by Zwolver

I'm aware that HIV is an RNA virus, so reverse transcryptase is needed to multiply the virus fragments.

Just because something is an RNA virus does not mean it needs reverse transcriptase…(those are referred to as reverse-transcribing viruses) (I presume you know this and something was lost in translation [pun somewhat intended]

Are we actually interested in discussing the original identification of the HIV virus? Whether it has been done satisfactorily? I don’t care if not, just thought that was what we were doing.

Yes, that's what I intended at least. Zwolver (no offence Zwolver!) has a tendency to veer off course a bit. ;D So before HIV was actually identified people thought it might be related to Human T-lymphotropic virus. One of the first papers: http://www.sciencemag.org/content/224/4648/497

I thought it was linked to the primate, and the aids from cats. I have never heard of this HTL virus. I'll read the paper i guess..

* im aware i drive offcourse a little, but this is how Columbus discovered the America's, right?

The sense in which Columbus discovered the Americas is the same as my discovering this website - accidental and long ago 'discovered' by others. Let's hope I don't have the same affect here as Columbus had there!

SHF, just don't give me any small-pox laden blankets and we will be alright. TEAM AMERICA!

Originally Posted by Zwolver

I thought it was linked to the primate, and the aids from cats. I have never heard of this HTL virus. I'll read the paper i guess..

Yes, it is generally accepted that the virus is a mutation of the "simian" form that occurs in monkeys and apes (SIV - Simian Immunodeficiency Virus). We don't know how it jumped species though. What we do know is that the pandemic strain is HIV-1, while there is another less communicable strain HIV-2. One theory is, since it is not uncommon to eat monkey meats in many parts of central Africa, the mode of transmission was blood from "bush meat". It's one of those things we are left to speculate and make best guesses. We will never know for sure.

So, since we can't answer that question, what I'd like to get at is how we actually identified the virus itself in the human body and how we linked that virus to the condition known as AIDS. First we started seeing random symptoms in people, it took a while to realize they were all related--symptoms were all over the map, and the cause was unclear. That's where HTLV comes in. People were already investigating that virus. They had already identified it, they knew what it looked like, and they were just figuring out that it triggered leukemia/lymphoma. The original name for HIV was HTLV-3, because when they saw evidence of a virus in AIDS patients, the evidence looked exactly like HTLV (which also has 2 simian strains, by the way!). So, how did they tease out this information? How did they determine it was a separate virus? Maybe I need to know more about lab work, as I"m having a hard time finding some of these details.

Originally Posted by JoshuaL

SHF, just don't give me any small-pox laden blankets and we will be alright. TEAM AMERICA!

Judging by your avatar, smallpox, affecting only homo sapiens, will not help me to eradicate your tribe, maybe some canine distemper in your water bowl