msf_staff: (Kasey)
Readers, I just received this information, and I thought you might appreciate it. Our communications staff verified that it's legitimate, but other than that, I can't tell you any more than this, so email them if you're interested:

Harper Global, a pharmaceutical market research company, is searching for people who want to participate in an online market research study about living with MS. This research study will involve several brief, daily discussions on the topic of MS which will take place online from June 9 to12. To qualify you must be between 18 and 70 years old, diagnosed with MS for at least six months, and must not use a wheelchair. You must have access to a computer several times a day to answer the online questions. Identities, opinions and perceptions will remain anonymous. About 35 people will be selected to participate. Participants will be compensated $100 for their time and participation, provided they complete the entire survey. If interested in participating, email Recruiting1@harperglobal.com for more information.
msf_staff: (Kasey)
Someone emailed me earlier this week about this article, reporting on a small study using stem cells from MS patients' own fat. The study was too small (only three participants) to draw a lot of conclusions, but it does raise some interesting questions.

First off, who knew there were stem cells in fat? That's entirely new to me. And of course, it raises the question of whether those of us with abundant stores can donate to those poor skinny few.

Well, I'm kidding about that last part. Sort of.

We all know what a controversial issue stem cells have been because of the debate over embryonic stem cells. Some promising research has been done with adult stem cells, but the article seems to imply that deriving adult stem cells from fat is a simpler process.

Won't it be wonderful if this turns out to be an effective treatment? Although, you have to love the irony - the anecdotal evidence suggesting that diet plays a factor in the development of MS includes the fact that MS rates increase when a country's diet becomes Westernized. It would be just too rich if our lovehandles turned out to be the key to wellness.
msf_staff: (Kasey)
≈ Sometimes the direction MS research turns is surprising. We're used to hearing about immunomodulators, stem cells, genetics... but worms? Anne Marie and I are in disagreement about this article. It gives her a bit of the heebie-jeebies, but I'm feeling vindicated for letting my boys play in the dirt.

≈ As I was getting ready for work this morning, I heard the familiar voice of a friend, coming from my TV! I looked up to find Jonna Patton on the Today Show, talking about her "bionic leg" - the electric stimulator she uses for MS foot drop. I knew Jonna before she got the device, and I can tell you, it really did make a dramatic difference for her. But she was always a go-getter, bum leg or not.

It was a very good piece, I thought, and nice to see a national media outlet devote almost 8 minutes of air-time to an MS symptom. Good job, Today Show!

≈ The new issue of MSFocus is available online - for those of you outside the U.S., or anyone who just can't wait for it to hit their mailbox. The feature series is on genetics and MS, but there's also a really interesting article on drugs in the pipeline for progressive MS. That's something people have been asking about for a while.
msf_staff: (Anne Marie)
Remember a few years ago when America Online was in the hot seat for releasing tons of data about the things people researched on the Internet? In what seemed like a matter of minutes, some web savants had tracked down individual, real people just by doing some quick logic based on the websites they visited. If such a thing ever happens to Google, the nosy folks who look through my searches are going to get an eyeful: sexual dysfunction, incontinence studies, depression – you name it. That’s because in order to keep the people who read our website, newsletter, magazines and publications well-informed, I need to be somewhat of an MS expert. If I don’t already know something about MS and its symptoms, I better know where to read up on the topic.

Part of this is in my blood. Before I started work at the Foundation, I was a reporter. I always enjoyed writing and interviewing people but I relished the research that came first; before I could explain something to the paper’s readers, I had to understand it myself. That wasn’t always a simple task. But as hard as it was to grasp Tax Increment Financing or to ferret out the details in a $1 billion school board budget, I sometimes find it even more frustrating to try and nail down the specifics of MS.

I like to deal in facts. With MS, few things are certain. Even the doctors who answer questions about MS on our online forum and in our magazine use what I like to call the “squishy” words: “usually,” “should,” “could,” “may” and “might.” We all want to give you a straight answer about your diagnosis and the symptoms you experience but in many cases the truth isn’t there, no matter how hard we look. As challenging as this is for me to accept, I know it must be more difficult for you.

As we prepare the Winter issue of the magazine, I recently read and reviewed a guide to healthy eating that was co-developed through the Harvard School of Public Health. In it, author Dr. Walter C. Willett talks about the crush of “breaking news” and “groundbreaking research” that seems to come out each day about what we eat and how it impacts our health. He points out that any one of those studies doesn’t present the answer to, say, what role cholesterol plays in our body, or if soy decreases or increases a woman’s chance of getting breast cancer. Instead, each piece of individual research is “like dropping stones onto an old-fashioned scale,” he writes. “The weight of evidence gradually tips the balance in favor of one idea or another.”

The same is true with MS. I hope that even though you might not always know for certain the wheres and whys, that you will all continue to add to the discussion and to look for answers. The more information that is gathered about MS and the ways it impacts the human body, the closer we will all be to replacing those “coulds” and “shoulds” with the facts.

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January 2013

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