msf_staff: (Kasey)
It's been an exciting week in MS and it's only Thursday! Ampyra was approved by the FDA for MS-related mobility impairment, and human trials began on a drug that is hoped to promote nerve regeneration in people with MS.

The MSF is today's featured charity on YourCause for Human Services. YourCause is an interesting site because it allows you to really connect with others who support the causes you're interested in.

In upcoming news, the MSF's Cooling Program begins its annual cycle on Feb. 1. If you're in need of a vest or other cooling items for next spring and summer, apply early! The applications will be available on once the program cycle officially begins.

National MS Education and Awareness Month is coming up quickly too. More about that soon!
msf_staff: (Staff)
I know this is an issue on everyone's minds right now, so I thought I'd re-print this from the news section of our website.

Is the Flu Shot Safe for People with MS?

Editor’s note: In this news brief, MSF Medical Advisor Ben Thrower, M.D., addresses the topic of flu shots and the flu, including H1N1, for people with MS.

It seems like everywhere you turn, there is news about the flu. What does all this mean for a person with MS? We need to clarify that there are two types of flu bugs being discussed. There is the common seasonal flu and there is the H1N1 or swine flu strain. Vaccines for these two forms of the flu come in both a nasal spray and injectable form. So, here are some general guidelines:

1) No person with MS should receive the nasal spray form of the vaccination. This form is a live attenuated (weakened) virus and is not recommended for people with MS.

2) People with MS who are on one of the beta interferons (Avonex, Betaseron, Rebif or Extavia) or Copaxone are not considered to be immunocompromised. The same is true for people with MS on no therapy. The risks and benefits of getting vaccinated for seasonal flu or H1N1 has to be looked at individually for these people. The risk of getting the flu is not higher in this group, but if they do get the flu, there is a good chance that MS symptoms will increase due to the infection.

3) Some people with MS may be considered to have lowered immune function. This would include people on immunosuppressive drugs like Tysabri, Novatrone, methotrexate, Cellcept, Imuran, Cytoxan and chronic steroids. These people should strongly consider getting vaccinated as they may be at higher risk for getting the flu.

4) The safety of the seasonal flu injectable vaccine has been established by the CDC for people with MS. We expect the safety of the H1N1 vaccine to be similar, although in fairness the vaccine will not have been specifically tested in people with MS.
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)
This article ran in today's issue of MSFYi, and I had to share it with you:

MSF Joins Forces with MS Technology Collaborative

For nearly a decade, MSF has helped to connect the MS community to assistive technologies (AT) through our Assistive Technology Program. We are pleased to announce that MSF has taken that commitment one step further by becoming an Affiliate Partner of the MS Technology Collaborative, a joint-effort between Microsoft, the National MS Society and Bayer HealthCare Pharmaceuticals. Created in 2007, the Collaborative is dedicated to helping people living with MS overcome cognitive, vision, and dexterity challenges through the use of AT.

The Collaborative’s home is, a comprehensive online resource built for the MS community by the MS community. With the guidance of a steering committee of nine people living with MS, has become a one-stop-shop for AT information and resources. Here, visitors can use the “Snapshot” tool, a short quiz that provides customized technology solutions based on each individual’s specific needs. also offers user-submitted technology tips, a monthly column on how to incorporate AT into your daily life, and an abundance of information about specific types of AT that are available, including options that are affordable and at times even free.

As an Affiliate Partner, MSF will work closely with the Collaborative, contributing content to and Helping to promote the Collaborative’s efforts to the MS community.

One such project that we’re particularly excited about is the development of an online game designed specifically to address the cognitive challenges of people living with MS. Expected to launch in June 2009, this game is being developed in consultation with leading healthcare professionals as well as several members of the MS community.

In the coming months, the Collaborative will look to the MyMSMyWay community to test the initial version of the game. Click here to register with and be one of the first to play this landmark game and provide your feedback.

We look forward to our ongoing partnership with the Collaborative, which we’re certain will help us continue to bring critical information and resources to the MSF community.

Some personal perspective: I imagine I'm preaching to the choir here on LJ, but I believe that computer technology is an essential of modern life. Today, access to the digital world is as critical to most people's daily activities as the access to public buildings and services guaranteed under the ADA. The difference is that a curb cut is always a curb cut; technology changes, progesses, and evolves, just as the condition of people with MS can change and evolve. For these reasons, your needs in terms of access to technology may not be the same tomorrow as they are today.

That's what makes a resource like so valuable. It not only provides a comprehensive picture of what's currently available in assistive technology, but it provides the ability to assess your current, real-time needs and find the right tool for the job.

I am absolutely thrilled to be working alongside the Collaborative. And a cognition video game just for folks with MS! How cool is that???
msf_staff: (Kasey)
Stu from MS Views and Related News stopped by yesterday, to tell me about the online resource library he's building for MS.

While he was here, he asked if I was just reading the weekly newsletter he sends or whether I was using the RSS feed of his blog for daily updates. I thought "RSS? I'm an LJer!" So I created a syndicated feed. If you want daily news in the world of MS, go add [ profile] msviews to your friends list.

Also, thanks to everyone who responded to my poll! I'll leave it open for another week or so, in case more readers want to weigh in. (Oh, and if you don't have an LJ account but want give your opinion on the poll, this journal does accept anonymous comments!)
msf_staff: (Kasey)


There's our man Derrick in the awesome new MSF t-shirt, with Conan O'Brien! The bad part? He didn't get to actually wear the shirt live on the show. (You have to give him credit for trying, though, right?)

Check out Derrick's comment to my last post for more photos.
msf_staff: (Kasey)
If you've been on the MSF Cruise for a Cause before, or been to one of our educational programs, there's a good chance you've met Derrick Lee, supervisor of our Program Services department and all-around great guy. If you're lucky, you've gone to karaoke night on the Cruise and gotten to hear that man sing!

Well, here is an interesting fact about our Derrick: he leads a double life. He may be a mild-mannered, helpful MSF employee during the work week, but on the weekends? He's bringing the house down as a member of the Lee Boys.

You may not have heard of the Lee Boys yet, but you will. Their stock is rising; just consider this little snippet of the band's bio to see what I mean:

In 2007 alone they performed for more than 250,000 music fans at festivals throughout the United States. In the process, their unique sound has attracted musical artists such as Bob Weir of the Grateful Dead, The Allman Brothers Band, The Black Crowes, Los Lobos, Michelle Shocked, Gov't Mule, Derek Trucks Band w/ Susan Tedechi, The North Mississippi Allstars, Umphrey's McGee, and Victor Wooten - all of whom have played with the Lee Boys and/or invited them to tour with them.

And this year? They were invited to play all the biggest festivals in the country - the New Orleans Jazz Festival, Bonnaroo, and Austin City Limits, to name just a few.

Now, though, the national exposure is starting, with the Lee Boys set to appear on Late Night with Conan O'Brien next week! (Can you tell I'm a little proud?)

The really cool part, and what makes this not just cool but also relevant, is that Derrick really wanted to use the opportunity to raise the awareness of MS. Aside from family and music, the MSF is clearly one of the things he's most passionate about. So we brainstormed, and together we came up with a (*cough*) subtle way of directing people to a message about MS. Derrick is going to be wearing a new t-shirt we designed just for the occasion (which I'm thinking we will probably make available in the MSF Store when the show airs) and it's kind of... bold. I'm really tickled with it, but you will have to tune in to see it and let me know how it came across.

So mark your calendars: Monday, December 8, 2008, at 12:35 p.m. Eastern, watch the Lee Boys on Late Night with Conan O'Brien! Spread the word!


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