This Is MS Multiple Sclerosis Knowledge & Support Community

onemike wrote:

I think this is one of the changes that we PwMS should be asking the NMSS for. When they bring in a new person to a position that wields a lot of power, whose decisions will likely affect all of us, they should present that person to us, before the decision is made final.

Well, I'd have to admit myself, that I have been remiss in joining the NMSS. I have meant to, but well...........I have no excuse, so I guess I shouldn't try to come up with one, should I? Anyway, the last non-profit I was a member of, we WERE given a vote and provided information on upcoming decisions that affected the membership. Does the NMSS not operate the same way? (I truly am asking.....I don't know.) I agree with you, onemike, on that.

Felly wrote:

By the way, in saying all this does not mean I'm not bored by the entire post!

Excuse me?

Art: Yes, that was sort of where I was leading, and I previously suggested a professional correspondece, also. But since I'm not familiar with the NMSS nor with their by-laws, etc., I wasn't sure just how their structure is truly set up.

Deb

willy,

i'd never before considered the similarities between non-biologists and the fuhrer. we sure don't want a new vp of research who winds up killing 6 million people in concentration camps!!!!!

let's be reasonable with our comparisons and metaphors. i think my crossword puzzle metaphor was a reasonable one, and a good example of an everyday situation where someone smart and experienced in similar sorts of endeavors could be useful if they had a fresh perspective. I'm not just saying any fresh perspective would be good-- that's why I'm encouraging us to think about candidates, so we could find someone who could bring in a fresh perspective that's good. I don't see either of the people I brought up (the NASA physicist or richard radtke of Sea of Dreams) deciding that the best way to deal with people with MS is to exterminate them all.

I'm not saying those people are perfect candidates, either. From what Deb says, Coetzee seems like a good choice, though we should look into him more, and certainly we should brainstorm more before settling on him. Willy, why don't you suggest a few people who you think would be good at the job-- we could even start with people who probably wouldn't take the job, just to get a feel of how you'd like the organization to be run. FDR and Churchill are disqualified though, being dead.

Just to clear something up about the question of expertise: the VP of research doesn't actually do any research. He is in charge of team that approves grants for other people to do research, and he interacts with the other NMSS administrators in deciding how much money will be given to research and towards what mission. So, the new VP of research will not have his own lab, will not have to dissect mice brains or bake petri dishes-- that can be left to other researchers with appropriate experience.

onemike wrote:i'd never before considered the similarities between non-biologists and the fuhrer.

Come on, onemike, you have to know that wasn't what I was getting at. I'm trying to prod people into justifying their boilerplate statements such as the need for a fresh perspective. In doing so, I'm not arguing against a fresh perspective but rather I'm asking people what they mean by it. My fuhrer comment was by way of noting that "new and different" for its own sake isn't necessarily the way to go.

I'm not just saying any fresh perspective would be good -- that's why I'm encouraging us to think about candidates, so we could find someone who could bring in a fresh perspective that's good.

Frankly, I think it would be a whole lot more useful to concentrate on what the "perspective" ought to be, which further entails an analysis of what's right and wrong with the current one. By virtue of compiling his "cure map," Art would seem to be in a position to make some contributions here beyond tossing around stock phrases.

From what Deb says, Coetzee seems like a good choice, though we should look into him more, and certainly we should brainstorm more before settling on him.

Her post on Coetzee was fantastic. Why? Bescause it was detailed and analytical. It provided the why along with the what. That's all I'm seeking.

Willy, why don't you suggest a few people who you think would be good at the job

I don't have a clue. I'm not going to move beyond my competence, and my competence does not extend to picking an NMSS research director. But my competence does extend to analyzing the logic of a proposition. I think I'm a reasonably good critical thinker, and a fair-minded one.

Just to clear something up about the question of expertise: the VP of research doesn't actually do any research. He is in charge of team that approves grants for other people to do research, and he interacts with the other NMSS administrators in deciding how much money will be given to research and towards what mission.

It would be really good to get even more detail about this. I don't want to get into my personal background, but I can tell you that I spent a long time looking at organizations of all kinds and how they run. The internal structure and funding speak volumes about an executive position. One thing that's clear from having read the NMSS's financial statements is that their director of research is one of the highest-paid people.

What isn't clear is the structure and duties of the job. For example, how are projects approved? Who else is involved? I see that the NMSS has research directors within subsectors, so they must also be involved. What's the balance between the research director's internal and external duties? onemike began this thread by accusing the current DOR of being a drug company stooge. Does the DOR spend much time with the pharmaceutical companies? If so, how so? Does the NMSS's director of research have a policymaking role? A fundraising role?

We don't yet have a good sense of what the DOR really does there, and until we know this it is impossible to intelligently suggest a candidate. This isn't a criticism of mine. It's a plea for more information. Hell, if you want to toss names out there, you can flip through a damn phone book for all it will matter. But if you want to potentially have an impact, then you'll learn a lot more about the position before recoomending someone for it.

I really wish whoever runs this board would force a login prior to posting. I wrote the posting above. One more idea along the lines of "more information" is that Art, who claims to have spent a lot of time interviewing a lot of people, ought to be in a good position to fill in some of these blanks.

good. willy, your last post was pretty helpful. i agree that compiling a list of questions to research, and then researching them, is a good step to take at this time. let's all of us (the people who are still paying attention to this post) try to cooperate in this information seeking. i'll start by listing all the factual questions that have been raised so far. (if i miss any, tell me). everyone else, post back with other factual questions you think ought to be answered before we go any further, and let me know if you're interested in helping to research to find these facts. if Art or anyone else knows the answers to these questions, please chime in.

Questions:

About NMSS structure:

--how much information is shared with society members ("ordinary MSers")? Is there a route of information sharing that we're missing?
--As a non-profit, the NMSS must have written rules for sharing information and decision-making. What are these rules?
--how are research projects approved?
--who besides the research vp is involved in approving projects?

About the vp of research job:

--What's the balance between the research director's internal and external duties?
--does the research vp negotiate with or interact with pharma companies? How so?
--does the research vp help make policy? does he help raise funds? Does he help decide how much money will be spent on research?
--who does the research vp report to?
--who reports to the research vp?

About the vacancy:

--Has the NMSS decided on Reingold's replacement?

Those are all the questions i can find right now, and I have to go out. If you think of any others, please add them. If you know the answers to any of these, please post them.

I for one am happy to do a chunk of this research. Some can probably be done on the web. For other bits, we might have to contact the NMSS. If Coetzee is as helpful as Deb says, maybe he'd be a good contact for this info. I assume that the NMSS is subject to rules of transparency so that they'd have to share this information with us-- in any case, I'd suggest that anyone researching be sure to join the NMSS first, to use constituency as a means of gaining access.

onemike wrote:As a non-profit, the NMSS must have written rules for sharing information and decision-making.

I'm not aware of any such requirement. Could you provide a citation?

>Has the NMSS decided on Reingold's replacement?

Yesterday, in speaking to a former 9 year volunteer member of the NMSS,
I was told that Reingold's replacement has likely already been chosen.

As for other information being released....the NMSS makes many of their paid employees sign confidentiality agreements. This former volunteer also told me some other very interesting information about the finances at the NMSS and the particular chapter that he was associated with. I think I'll leave well enough alone on that one!

Oh, darn, Harry!

You tickle our curiosity and then keep us in the dark!

(Truthfully, I do totally understand the need for confidentiality. Especially on a public website. It's so tempting though to pretend like we're whispering to each other when saying "Oh...DO tell!", as if we're the only ones here. )

I would suspect as Harry just said, that a replacement most likely already has been chosen. Organizations sometimes know many months and/or years ahead of time who they will name in certain positions once they are vacated.

It'll be interesting to see how this one plays out.

Deb

i got the info about the information sharing "rules" from a post by art a few pages up... read back in the thread. to get non-profit status, an organization has to write these things out (for review by the government, i assume).

onemike wrote:i got the info about the information sharing "rules" from a post by art a few pages up... read back in the thread. to get non-profit status, an organization has to write these things out (for review by the government, i assume).

Here is the relevant posting from art:

The NMSS is a member-based nonprofit and as such it has two ... legal duties in order to maintain its tax-exempt status: 1) to spend a certain percentage (almost all, actually) of its funds on activities relating to its mission ("to end the devastating effects of MS") and 2) to take input from its members on these tasks as outlined by whatever bylaws they have.

I'm pretty sure that they don't confer this right to members, but rather to the board. But we could suggest to the board members (membership is publicly available) that members be given some say in this decision. Sort of the equivalent of shareholders voting in board members. They, of course, don't have to listen - but I wouldn't be surprised if they weren't open to taking public comment.

They aren't a private company and are therefore held more accountable to listening to their consituency than a non-public for-profit company. I think a well written letter to each of the members of the national board of directors might be an interesting way to go.

And here is my comment:

Every corporation, be it for-profit or non-profit, must have a set of bylaws. I have read many such bylaws and even helped write some of them. I have never seen a set of corporate bylaws that require an organization to allow a group of non-members and/or non-investors to become part of the process of hiring its executives.

That said, onemike, perhaps if you feel a need to spin your wheels you can request a copy of the NMSS bylaws and see if you can find a phrase in them to your liking. Far be it from me to tell you how to spend your time, but I think you'd be much better off to research the research director job and the potential candidates for it.

In my opinion, the only way you could ever have any chance of having the slightest impact on the NMSS would be to come up with knowledgeable recommendations supported with a solid rationale. It's a waste of time to think that you're going to force your way into their deliberations.

i'm off to spin my wheels...

just a note to close up this thread: i'm exiting this conversation to research the questions i collected above. i'm disappointed that the thread so quickly turned into only a 3-way conversation (as opposed to the many voices we had early on). i guess that comes naturally from the fact that some people read and post so much more frequently than others.

i originally posted here hoping to find people interested in acting with me as a sort of vigilance committee to make sure the NMSS's next VP of research will do a good job. anyone interested in doing this, go ahead and post here and i'll get in touch with you. i'll check back periodically.

if you're not interested in helping (this would require more than just b-board posting-- research will be the first step) then feel no need to post further on this thread. i'm not interested in carrying on this conversation with people who aren't interested in getting involved in this project. i don't have sufficient energy to convince people-- just enough to work with people who are already convinced that this sort of vigilance is a good use of our energy.

thanks for the input, everyone who's helped shape this idea so far.

Onemike:

I'm interested. As you know, I even have someone whom I'd like to see at least in the running.

Also, just FYI to you onemike (perhaps as support and encouragement for your efforts), I work for a union (although not a corporation, I realize that), and our constitution and by-laws give the members the TOTAL right to vote for executive positions. And believe me, there ARE ways to make statements and influence people, organizations, and the government. The Unions are experts at it. I've been trained by some of the best.

When I have time, I'll fish around (research) a little, also.

Good luck. You just never know what may come of someone's efforts!!

Deb

OneMike

I must confess I haven’t read all the posts on this thread but first and foremost I want to thank you for your willingness to step up to the plate to try and shape MS research. I believe the entire “MS Research Community” needs to seriously listen to the perspectives of PwMS.

For lots of reasons I think the particular task you’ve proposed is especially formidable. In my opinion that doesn’t mean you and others should not pursue it. As for me, I am sole support, still working and could not devote the time (as you noted) this effort will take.

I have another idea though. Has anyone tried to work out some kind of arrangement or agreement with NARCOMS (North American Consortium of Multiple Sclerosis Centers) for accessing and utilizing their patient registry database? I assume all data people report would be aggregated and confidential.

The idea of using existing databases to “research” off-label drug use was mentioned I think in one of Finn’s posts as a way to get more sorely needed information. If PwMS were routinely and regularly encouraged to report their use of LDN, minocycline, desipramine, Zocor, etc on the NARCOMS questionnaire, (something PwMS could promote fairly easily on the internet I would think) the NARCOMS database could become a source for obtaining and correlating potentially useful data about PwMS’ experiences with these drugs.

I’ve only completed the initial questionnaire and for sure NARCOMS initially gathers lots of information on the CRAB drugs and EDSS related info. At the very least, just getting access to the aggregate data base might turn up some very interesting info not controlled by the drug companies. The “by-line” on the web site says the drugs companies’ support of NARCOMS is unrestricted. Somebody would sure find out how unrestricted when PwMS try to access the database. Of course, NARCOMS would probably have a host of their own issues with the basic idea too. I really don’t know what those might be.

The concept also excites me because it has the potential to be a worldwide effort. According to the NARCOMS web site, www.mscare.org, there is also an International Committee on Databases in MS with 12 participating countries.

So, what do people think about the idea? Does anyone know if organizations or people not formally affiliated with NARCOMS have tried to access and use the patient registry database? If so, how easy or hard was it? If not, what are some of the pros, cons and hurdles PwMS would encounter trying to implement the idea?

This would involve a lot of work as well. OneMike, is this something you’d be interesting in pursuing? Even though I don’t have time to work on this either, I decided to go ahead and post the idea because it seems to me that it might have some potential.

Take care all. I'm hoping somebody takes the ball and runs with it, or at least continues to explore the feasibility of doing something like this.

Thanks.

Sharon

Ok...here's a suggestion of mine on how to perhaps become involved in influential corporate activities of the NMSS and/or MS in general.

First, here's what I located regarding what the responsibilities of the position of NMSS's VP of Research entails:

Dr. Stephen C. Reingold

Dr. Reingold is responsible for the national research programs activities of the National Multiple Sclerosis Society, the only voluntary health organization in the United States dedicated to improving the quality of life for those living with multiple sclerosis, through programs of research, services, education and advocacy.

Responsibilities include the administration of an annual multimillion research and training program supported with Society funds and oversight of the Society's clinical research and research information programs. He serves as liaison between the Society and MS basic and clinical research scientists and physicians, Federal and other agencies, local Society chapters, and pharmaceutical corporations, undertaking the search for new MS treatments.

Dr. Reingold obtained a doctoral degree in neurophysiology from Cornell University and was affiliated with Princeton University and Rutgers University, before joining the National Multiple Sclerosis Society staff in 1983. He has over 50 scientific publications related to MS and other biomedical research areas.

COMMENT FROM DEB: Here is something interesting that I came across that indicates how someone might be able to help effectuate change, or at least represents an avenue to explore:

"The Multiple Sclerosis International Federation (MSIF) was established in 1967 as an international body linking the activities of National MS Societies around the world."

The NMSS is a part of this organization. Mike Dugan sits on the National Board of Directors of the NMSS, as the President & CEO. He is also a Board Member of the MSIF and sits on the CEO Advisory Group of the MSIF.

THESE ARE EXCERPTS FROM THE MSIF WEBSITE:

CEO Advisory Group

The CEO Advisory Group is comprised of Chief Executive Officers (CEOs) of every MSIF Member Society (Full and Associate). The Group meets once a year to discuss issues specific to their role and initiate or provide feedback to MSIF projects. It elects its own Chair who sits on the Board with two other elected members.

The current Chair of the CEO Advisory Group is Alistair M. Fraser, President and CEO MS Society of Canada. The other two Member Society CEOs nominated by the CEO Advisory Group to sit on the Board are Gen. Mike Dugan (USA) and Peter Kauffeldt (Denmark).

COMMENT FROM DEB: The MSIF also has a committee that was created for people with MS to have their voices heard. As you will note below, the Chair for the U.S. is Mr. Tom Houle. He can be contacted via the website. My point in this is perhaps by contacting Mr. Tom Houle to present PwMS suggestions, etc., the word will spread up through the MSIF PwMSIC Committee, which thereby communicates their information on up the line to the Board members, etc. of the MSIF (thereby getting to Dugan of the NMSS). I'm only suggesting that perhaps by "working" the already existing path created for MSers to have their voices heard, just might be a possible effective method to utilize (?)

MSIF Standing Committees

People with MS International Committee

The People with MS International Committee (PwMSIC) is a committee of people with MS representing every Member Society (Full and Associate). This committee proposes projects, nominates its members to work on MSIF projects, exchanges information and works to ensure that people with MS actively participate in the work of national MS societies and the MSIF Committees and/or Work Groups.

The PwMSIC is divided into 8 Clusters representing various regions of the world. This structure allows for more efficient communication and regional decision making. Each Cluster has Cluster Leader who co-ordinates communication within his/her Cluster.

The Chair

The current Chair of the Persons with MS International Committee is Susan Tilley from the UK.

People with MS Advisory Group

The Persons with MS (PwMS) Advisory Group was established in 2001 to co-ordinate the activities of the Persons with MS International Committee (PwMSIC). The Advisory Group includes the PwMSIC Chair and Vice Chair, the 8 Cluster Leaders and up to four co-opted Cluster Members from larger Clusters. The PwMS Advisory Group reports to and from the PwMSIC.

PwMSIC - Countries U - Z

These are the members of the committee representing UK, USA, & Zimbabwe. Click on the picture to read a fuller biography where available.

Contact us
If you would like to contact your national representative click here and put the name of the person you would like to contact in the subject line.

UK

Ms Susan Tilley (Chair)
Sue works with accounts in the charity sector, and has served as Assistant National Treasurer for the UK MS Society. She lives with her 3 cats in Northampton.

USA

Mr Tom Houle
Tom is a retired professor of social work who lives in Sioux Falls, South Dakota. He was a Professor of Social Work for 25 years prior to this he worked with young offenders.

Zimbabwe

Mrs Gunilla Nilsen

Gunilla studied social science in Helsinki, Finland. She has two children, Angela and Richard.

COMMENT FROM DEB: Also, on the MSIF website were some interesting "how to" series of education material. The one entitled How to Influence Public Policy was extremely interesting and might prove useful to anyone who would like some hints, etc., on how to construct and implement campaign strategies, straight from the horse's mouth, as they say. (This is very similar to the methods employed by the Unions, also.)

http://www.msif.org/docs/How_to_influen ... policy.pdf

http://www.msif.org/docs/How_to_Develop ... ociety.pdf

http://www.msif.org/docs/37772_Members_ ... _2nd_E.pdf


Deb