Monday, October 29, 2007

msb-0217 Genetics and MS ... Who knows?

msb-0217 Genetics and MS ... Who knows?

intro

Feedback comes first, so...

I'm still waiting to hear from anybody on whether I should up the frequency on these shows.

On the job front, I am discovering a lot of information about usability and disability through Section 508 [ http://www.section508.gov/ ] from their great website.

I'm also discovering what the federal government is doing to make life more "rational" for the 45,000,000 people who are disabled in some respect in this country (makes the estimated 250 to 400,000 US MSers seem like the demographic, 1 in 1200, 0.0833% fraction of the population that it is.)

There were a lot of great links to follow on the JobEnable.com website.[ http://www.jobenable.com/ ]

I definitely want to interview Matt and Rob.

Incidentally, I am now at 33,000 downloads. We'll see if I can build on that with the upcoming ad in "Momentum".

---- "Butterfly Disease" by: "undadogg" http://www.myspace.com/undadogg

Feed Forward comes next, so...

This is "your" segment.

Say "your" piece on this segment.

Share with other MSers whatever "you" want to share.

Drop me an email: charles at MSBPodcast.com

And I would apreciate if someone could write a review of this podcast on iTunes [ http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=120932170 ] You can just select the link and, eventually, scroll down the iTunes page to "Customer Reviews"

---- "Disease" by: "Allison Crowe" http://www.allisoncrowe.com/

Feed Me comes third, so...

Do you have a therapy, product, good or service that is of interest to MSers?

Consider advertising on this podcast.

Reminders on this segment only cost $0.03 per reminder per download of an episode. (A $30CPM targeted at MSers.)

It can/should lead to a full ad, in text, audio or video, which costs $3.00 per download.

That sounds expensive until you do the math and realize that if nobody downloads it it costs you nothing, unlike print, where you often can't even get an ad in to the specialized journals, or radio or TV where you'd just be wasting your money with the 0.0833% MSers rate of return. (That's about six times "below" the level of "statistical noise".)

But MSBPodcast is 100% in your market, and you only pay per download of your material.

No play, no pay.

Reach the MSers who would buy your therapy, product, good or service, with-out having to waste your advertising money on anyone who is "not" interested...

Send me an email at: charles (at) MSBPodcast.com

---- "Disease" by: "Smeer" http://www.smeer.com/

"Thesis:"

I heard on a podcast called "On The Media" [ http://www.onthemedia.org/ ] about a couple of companies out there, "23 and me" [ http://23andme.com/ ] and "Navigenics", [ http://www.navigenics.com/ ] that are offering a genetic screening service which can take samples from individuals like me and thee and test about a couple of dozen genetic markers to tell people who submitted their genetic sample whether or not they are at risk for some diseases.

I wonder if they might be able to tell us whether we MSers have any point of genetic commonality.

Since the incidence of MS seems to be pretty evenly spread amongst the population, (it seems to make no difference to a person chance of contracting MS whether a person is male or female, nor does it strike any racial group, ) it seems to me that, given a wide enough sample, these companies could be doing research into finding or eliminating the presence of a genetic marker for MS.

It could be privately funded by we MSers ourselves. (And we would find out about any possible association with any other genetic disease along the way.)

---- "Jungle Disease" by: "The Joneses" http://www.fullbreach77.com/kicks/s_joneses.html

"Synthesis:"

The presence of MS amongst a population seems to be pretty independent of gross genetic factors such as gender (which immediately cuts some of the area of test since there is one leg of a chromosome that can be eliminated right away,) or race.

Statistics might seem to be boring and dry, (that is their saving grace as far as I'm concerned, we can be dispassionate about numbers,) but they are essential.

We MSers are already behind the eight ball when it comes to beating the odds.

We have a disease that already falls below the media radar in numbers. Only one in twelve hundred people, or 0.0833% of the population seems to get MS. (That's still millions of people world wide, but the world has other bigger problems, like coloring their hair blond, or finding the best deodorant.)

This is something that we "could" do, as long as it doesn't cost too much, for any and all of us to get our genetic profile spat out onto a CD-ROM. (The costs for raw sequencing are dropping all the time.)

We could then upload the lot to a central database, without any data identifying us individually so there's no privacy concerns, and let Google index the lot.

Researchers can then take all of the data and use statistical techniques to look for points of commonality.

They can then narrow these down to a specific gene or series of genes expressing themselves in the sample of MSer data.

Maybe there is some and maybe there isn't.

If there is that would give the general population a predictive diagnostic tool. They can then take precautions and have special MS related tests run first, instead of waiting for years and several repeated attacks and misdiagnoses and more atacks and more misdiagnoses before finally settling on a diagnosis after the damage may have become irreparable.

---- "Disease" by: "The Meshes" http://themeshes.com/

"Conclusion:"

The incidence of MS seems to be pretty evenly spread amongst the population, (it seems to make no difference to a person chance of contracting MS whether a person is male or female, nor does it strike any racial group.)

It seems to me that, given a wide enough sample, these companies could be doing research into finding or eliminating the presence of a genetic marker for MS.

It could be privately funded by we MSers ourselves. (And we would find out about any possible association with any other genetic disease along the way.)

It might be one area of research that all of us MSers could investigate on our own and, while not immediately useful, it would give us a pool of data for further investigation. (Statistics may be about the mere manipulation of numbers, but the numbers actually mean something.)

Maybe there "is" a marker out there.

If it could be identified, we could warn the susceptible potential MSers out there to not wait for a catastrophic attack before the clinical process of recovery can begin.

The therapy can be started as soon as the early symptoms are detected.

---- "Butterfly Disease Sassa Le Remix" by: "undadogg" http://www.myspace.com/undadogg

Outro

2 comments:

Miss Chris said...

"We have a disease that already falls below the media radar in numbers. Only one in twelve hundred people, or 0.0833% of the population seems to get MS. (That's still millions of people world wide, but the world has other bigger problems, like coloring their hair blond, or finding the best deodorant.)"

Well said. It seems the medical community focuses so much time on trivial things. I'm sorry but when you have diseases like this out there, I really don't care how they've cured baldness, or erectile disfunction for that matter. Or hair color or anything else like that. This is a subject in my new favorite movie "Idiocracy". See it if you haven't. So funny! And true!

Charles-A. Rovira said...

Its the "tyranny of demography".

The problem of the low hanging fruit is that its the first thing investors look at. They want a quick return on their investment.

Its one thing to invest in the necessary (and we MSers definitely feel that finding treatment for MS is definitely necessary,) but its a small market and a lot more men are going bald than get MS,

So what do you focus on if you're in it for the money? ... Right ... "Cures" for baldness.

That's why I'm so hot on using using the world-wide reach of the internet to span national boundaries.

I've had contributors from MSers who speak other languages, to prove that it could be done.

I've recorded an interview with an MSer in Australia, to prove that it could be done.

What else am I going to prove?

To start with, that this is a viable medium for getting entertainment and news out there for soit disant boutique diseases like MS.

You wouldn't believe what I want to finish with...

That its possible to carve out a piece of the media dedicates to any disease.

I also want to make a living bringing entertainment and news to people, disease sufferers, without resorting to begging or fluffery.