Suggestions for the NMSS

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby BioDocFL » Mon Jan 24, 2005 7:16 am

OddDuck,

My comments on the 'funding trail' were based on personal experience. I literally came to work one morning and found a fellow post-doc slumped over his desk having a stroke from the stress of being in a bad lab. I got him to the ER quickly and he got better but, unfortunately, that lab is still in business and getting funded by a national disease organization and producing nothing. I didn't waste much time in that lab and neither did most other post-docs.

Wesley
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Boston Cure Project weighing in

Postby art » Mon Jan 24, 2005 12:42 pm

OddDuck pointed out that a reply from me/us was requested. I've been a bit swamped and haven't been checking in as much as I usually do.

Short Answer: We'd be happy to help with our contacts to pharma companies.

The longer answer is that it only makes sense to go to a for-profit company with an idea that 1) makes money and 2) is in their field of expertise.

The money it makes can be indirect (e.g. through increased good-will), but a for-profit company can't afford charity for charity's sake. Some will do it because of particular employees (often high-ranking) have a personal agenda they wish to put forward (e.g. Ben & Jerry), but just asking them to do something because it is the right thing will lead nowhere. And any return on investment has to be demonstrable unless the investment is relatively small.

So, what can we ask the pharma companies to do? I don't have any killer ideas at the moment, but I'm willing to help pass along some if they pop up here.

As to what suggestions are there for the NMSS? They *are* in a position to do charitable work that people with MS want to see done. I think there will be a problem making those changes due to system dynamics problems in a large 50-year old organization that has a very strong belief that their current methods are working just fine. I wouldn't have started my own organization if that weren't the case.

Obviously from what I'm doing my suggestions involve creating a specific plan, involving humans more, and executing it with feedback. I reject "basic science" for its own sake as a valid target for a disease nonprofit to be investigating (I just lost all the scientists there, but I can explain if needed).

I came up with an analogy the other day, which is meant to be a potential compliment not an insult: I see the NMSS as a Concord jet *driving* down the highway at 150mph. They're the fastest thing on the road and loving it. They just haven't noticed that if they only pulled back on that lever...

They have the resources and clout to really have an impact on MS research, but history has them stuck in a rut and money has them afraid to get out of the rut. But man, if they did, they could break the sound barrier.

Anyway, I'm happy to help with concrete proposals, but they'll need those 2 criteria or we'll just get deaf ears. The only other option is to find a funding source (NMSS, NIH, etc.) and a willing researcher and do the administrative work ourselves to get the trials we want up and running.

It's hard, but doable. We can help guide that effort if someone with sufficient persistence wants to take the task on.
Art Mellor Dx 2000
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Postby OddDuck » Mon Jan 24, 2005 1:02 pm

Hi, Art!

Well said..........and thank you!! It's great to see you again (sort of.... :wink: "Hear" from you, I should say!)

Best always!

Deb

EDIT: Actually, what appears to be the underlying "theme" in our discussions here is something I have mentioned oftentimes in the past. Any "change" with any direction of MS research (NMSS, MS researchers or pharma companies) will need to come from us............the patients, the people with MS and/or affected by MS. Which, this communication directly with the NMSS may be a small step, but it's a step toward us being "heard".

By the way, I've been informed by the NMSS that they will indeed respond to our most recent batch of suggestions/comments in the next day or two. I expressed our appreciation for their time with us. I think this was a good and hopefully educational experience for us both, and a sign of better things to come in the near future from MS research!

I'll be posting the NMSS response as soon as I receive it!

SECOND EDIT: Oh, and Arron!!! A Million thanks goes to you for starting and maintaining this website where such an exchange of information and expert ideas regarding MS can be conducted! Many, many thanks!
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Postby OddDuck » Wed Jan 26, 2005 4:35 am

Ok......here are some more responses from the NMSS (after reading this last batch of suggestions.) Sharon, they will be addressing yours shortly.

Deb
*******************
Wesley:

1. Something I have mentioned previously is that funding organizations need to hold the funded researchers accountable.

This is a good point and one that we work hard to achieve. Every single researcher receiving funds from NMSS has to provide us with an annual report of their research progress. We on the staff review the progress against the goals stated in the application. If there are questions about lack of progress, then we query the investigators. There are no free rides. Every researcher receiving support from NMSS knows that the funds can be taken away for lack of progress. In addition if a researcher is coming back to us for continued support, our reviewers will scrutinize the application to make sure that the scientist has actually been productive (in other words published research papers) with the money provided. If they haven’t shown a record of progress, it is highly unlikely that they would receive funds from us.

2. The NMSS should at least facilitate networking between researchers.

We try to do this in a few of ways. First we have two new funding programs (the MS Collaborative Research Centers and the Translational Research Partnerships on Nervous System Repair and Protection in MS) that are specifically targeted to create a network of researchers and to bring new researchers into the field of MS. Second, we provide money to support scientific meetings of researchers across disciplines. These are not meetings that we specifically organize. Rather they are organized by the researchers. We also do no attach any ‘strings’ to our support other than to report to us on the outcomes of the meeting. Third, we (NMSS) organize scientific workshops ourselves with the express purpose of bringing researchers together on timely topics related to MS. Recent examples were workshops on the genetics of MS, design of clinical trials for MS given the proliferation of new potential therapies, nerve repair and so on. When we organize these we try very hard to bring a cross-section of the research/clinical community together in order to create the networks suggested. Fourth, we also sponsor the annual ACTRIMS (Americas Committee on Treatments in MS) meeting. That meeting which is open brings together clinicians, scientists, and others to hear about the latest MS research and to give them an opportunity form networks. Every two years this meeting is held in conjuction with our European counterparts in order to facilitate networks across our respective continents.

I would suggest that Wesley try to attend the Federation of Clinical Immunology Societies (FOCIS) meeting (being held in Boston this year) or the annual meeting of the American Academy of Neurology (being held in Miami), or the annual meeting of the Society for Neuroscience (being held in Washington D.C). These meetings are attended by many MS researchers and I think would perhaps paint a more accurate picture of what is happening out there.


2. And then you mentioned neuro-protection. I would like to see a project, perhaps leading to clinical trials, of difluoromethylornithine (DFMO).

This is new to me and so I can’t really respond other than to say that it sounds interesting. I can pass it along to researchers who may be interested in finding leads for neuroprotective compounds. Thanks.

Bromley:

1. There should be much more international collaboration in MS research.

We are trying hard to that. To give you a few examples. First, we do support projects outside of the United States We are currently funding work in Italy, Israel, Australia, the UK to name a few. Second, our special project, the MS Lesion project, is in fact a large international collaboration of leading MS researchers in the United States and in Europe. Third, our efforts to try so solve the genetics of MS involves a collaboration of genetics researchers in the US and Europe. Finally, our new initiative on Neural Repair and Protection in MS specifically was targeted to attract large scale collaborative groups from around the world. Check out our web site in the summer to see which groups are picked for this new collaborative effort.

2. Researchers given substantial sums of money should be required to come up with a real advancement in the knowledge of MS.

I would be interested in hearing ideas for measuring real advancement. From our perspective we can point to the fact that there are many many more drugs being tested in clinical trials today than there were just 5 or 10 years ago. This is real progress and this depends on the many researchers working hard to test their ideas, develop better understandings of the disease course of MS and so on. We continue, of course, to desire more and more research that leads to new and better drugs to manage and ultimately cure MS. One has to be cautious though about jumping to conclusions too quickly about whether or not a particular line of research is or is not really advancing the knowledge of MS.

To give you but one example, the new drug Tysabri was developed from research done to try to understand the how immune cells leave the blood stream and get into particular organs (the nervous system in the case of MS). When the researchers (one of whom was in fact funded in part by NMSS) were looking at the question, they weren’t really thinking about creating a new drug for MS. They were trying to study how these immune cells move from one place to another and the rules governing that process in the context of MS. At that time scientists had great difficulties answering that very important question. These researchers came up with some molecules which helped them answer their question, and in the course of doing that someone came up with the idea that these sorts of molecules might be another possible way to help treat MS. Looking back one can say that that initial work was a true advancement, even though at the time they didn’t appreciate just how big an advancement that would be. I am optimistic that there are lots so similar examples out there.


3. More research in collaboration with researchers of other degenerative diseases eg Parkinsons, Alzeimers etc.

We are always interested in trying to foster collaboration between researchers within the MS community and from other diseases. We try to do that through our workshops and our MS Collaborative Research Centers program.

4. Much more research on neuro-protection.

We agree. That is why we created our program on Nervous System Repair AND Protection in MS. Up to now our understanding of how to go about that research was primitive, but now it seems to have reached a point where we can tackle it in a way that can lead to possible therapies.

5. Too much research has relied on EAE and there are some big questions as to how applicable this is to MS.

This is a good point and one that has been debated long and hard. Finding other models that mimic MS is not trivial but scientists are trying hard.

6. I would also like to see a research project which answers the question (once and for all) - is MS an auto-immune disease?

This is an interesting idea. I’m not certain that one could answer this question with one project or actually do so once and for all but one could try to get at the different parts of the issue.

Joyce:

1. My question is just simply what it will take to get some of that money put aside for some clinical studies of LDN. It looks like a researcher would have to put together a package stating what they would do? Can they be more precise about what would be needed. Perhaps if all of us knew exactly what it would take, we could start working on accomplishing that.

Raising money for a clinical trial for LDN would involve a few steps. First, the researcher would have to be willing to do a placebo-controlled trial (i.e some get LDN and their responses are compared against those not receiving LDN). This really the only way to validate the drug’s effectiveness in MS. Second, it the researcher would have to come up with a clinical trial design that asks the right questions in with the right group of patients. A poorly designed trial will only lead to confusing outcomes and that helps no one. Finally once they have the trial designed they would need to put together a proposal, determine how much it would cost and then approach the pharmaceutical company or a funding agency like NMSS or NIH for support. That’s the process in a nutshell. The key though is convincing the researcher to do the placebo-controlled trial. That is the gold standard for showing the effectiveness of a potential therapy.

HappyDaddy:

1. ….if our MS societies will not become more proactive in directing certain trials which have limited profit potential, I’m afraid nobody will and it will be up to the MS patients themselves to try to get some cures working as is happening today. The limited profit potential might even be a good measure in deciding which trials should be sponsored by MS societies since it are these trials no company will invest in and clinical trials with already approved drugs can be done within a reasonable budget so are doable by the NMSS.

This is a good point as well. I guess, what I would need to know is what is considered a reasonable budget. To give you an example, a recent trial (which is being funded by NIH) to look at whether or not the combination of Avonex and Copaxone work better together than when taken individually is going to cost close to $30 million. That was a reasonable budget for the trial. That is close to what we spent last year for all of our research projects. I am not trying to whine, but to simply illustrate the challenge that we and other private funders face with regards to clinical trials. We keep an open mind, and do indeed fund smaller trials particularly in their initial stages.
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Postby BioDocFL » Wed Jan 26, 2005 6:32 am

OddDuck,

Thanks for getting the responses from the NMSS. I think they gave good answers overall. It gives a better picture of their organization, not some cold monolithic bureaucracy but people trying to coordinate support to multiple research tangents over which they don't and can't have full control.

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Postby OddDuck » Sun Jan 30, 2005 6:09 am

Hi, folks!

Ok, sorry it took so long, but here are the final responses (to Sharon and Art) from the NMSS.

Again, I'd like to thank the NMSS Research Department in New York for participating! I believe this has been a really positive beginning for opening lines of communication between them and the people directly affected by the disease. :D

Deb
************************

Sharon:

1. ...actually one of my recommendations is that the NMSS partner with people with MS, their family members, caregivers and significant others in their work.

We agree. We are here for people with MS and their families. In the areas of research, we are partnering with people with MS because the studies couldn't happen without them. A good example of that is the Sonya Slifka Longitudinal MS study. This research project is tracking the impact of MS on the quality of life of people with MS over a number of years. We're not just collecting information for the sake of getting it. We and other researchers are using this information to talk to federal and state legislators about insurance laws, coverage of MS drugs, disability issues and so on. Another example is our tissue banks. People with MS are critical partners with us for the these facilities. Hundreds of people with MS have signed up to donate their tissues to these facilities so that researchers can use them to ask specific questions. Finally, all of the clinical trials and the clinical research we fund couldn't happen without the willing participation of people with MS and their families.

2. The NMSS continue to focus on targeted gender research projects.

We are continuing to support lots of gender research. We haven't stopped being interested in gender issues and are currently committing several million dollars to this line of research.

3. The NMSS focus on hormone research (estriol, estradiol, progesterone, testosterone, DHEA and cortisol) in their targeted neuroprotection and myelin repair project.

This is an interesting idea. I'll take a look at the thread. Side note from Deb: Sharon's post was extensive, so when I passed our comments on to the NMSS I asked them to please read Sharon's post directly from the thread and carefully consider her comments, etc., so that is what they are referring to here.

4. In addition to the individuals with expertise in research on sex hormones and MS, the NMSS could invite experts in bioidentical hormones and balancing, blood and saliva hormone testing, as well as neuroendocrinologists and others to participate in their targeted neuroprotection and myelin repair project.

Again, an interesting idea and will pass it along.

5. The NMSS investigate the question: Are high levels of the stress
hormone cortisol in people with MS a major factor in the MS disease process and/or the disease process itself?

We are actually funding a project that looks at the links between stress, stress hormones and disease activity. Thanks for the suggestion.

Art from Boston Cure Project:

As to what suggestions are there for the NMSS? They *are* in a position to do charitable work that people with MS want to see done. I think there will be a problem making those changes due to system dynamics problems in a large 50-year old organization that has a very strong belief that their current methods are working just fine. I wouldn't have started my own organization if that weren't the case.

I'd be interested in hearing Art's suggestions for how we can 'pull the lever'. NOTE FROM DEB: Art, my understanding that the intent here is for you to feel free to contact them directly (and/or continue to do so), as communication via this thread will now be closed.

Thanks again, everybody!!! This was fun and interesting. And we have been heard!!!

:D

Deb
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Postby OddDuck » Sun Sep 18, 2005 6:13 am

Hey, folks!

This is bringing back up an old topic, but the NMSS now has a new initiative.

The CEO, Joyce Nelson, has asked for specific input and feedback from the MS world. http://www.nationalmssociety.org/questionnaire.asp

Of course, I have put in my two cents. :wink:

The deadline for submitting remarks is September 30, 2005........so PLEASE participate!

Thanks!!

Deb
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