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09 May 2012 @ 12:07 pm
Dr. Kantor Visits the MSF!  
Back in January, we had the pleasure of having Dr. Daniel Kantor, Medical Director of Neurologique and President of the Florida Society of Neurology visit the MSF. While he was here he was kind enough to record some videos for us discussing current treatments (Ampyra, Gilenya, and Low Dose Naltrexone) and upcoming MS treatments. Here is the first video of a three part series called “Moving Forward with MS Treatments.” All additional videos can be found on our YouTube page and on our webpage on the Search for Causes, Treatments, and a Cure page in the Coping with MS section.

You can check out Dr. Kantor’s website at Neurologique or follow him on Twitter at @DrDanielKantor.

Stay tuned for more videos to come. Enjoy!

 
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msf_staff
22 March 2012 @ 04:02 pm
National MS Education and Awareness Month 2012  

March is just around the corner, which means one thing for the MS community and the Foundation –National MS Education and Awareness Month (NMSEAM) is kicking into full gear. From fundraisers to passing out awareness kits, the key this month (and all year long) is spreading awareness throughout the community about what MS is and how it affects those that are living with it.

Each year we come up with a theme and initiative to help spread awareness by engaging the MS community. Our Awareness Committee put on our thinking caps and came up with a pretty great theme for 2012, (drumroll, please)…”At Your Best with MS.” While many ideas were in the running, we chose this one because we felt it was incredibly important to encourage people with MS to do everything they can to maintain the BEST quality of life possible with the disease.  Only you know how this may apply to your own life with MS, but for many people, being “At Your Best with MS” means adhering to medication plans, eating healthy, keeping fit, finding hobbies and interests that bring pleasure, developing a support network, maintaining good emotional health, and continuing employment when possible.

With the theme decided upon, we needed to come up with an initiative that allowed you to showcase how you are “At Your Best with MS,” and how as you journey through life, you discover that you can do some things better than other things. Thus our 2012 initiative was born – “Show us Your Best.” Embracing your creativity with an essay, poem, video, etc., we want to know what you do well and how you use your best to help the MS cause. Grand prize winner will receive a cruise for two aboard the MSF’s Cruise for a Cause 2013.

We always look forward to NMSEAM because it is a time for the MS community to band together to bring awareness of MS to the forefront.  So please join us this year in showing the MS community your best! For more information on how you can get involved or to request an awareness kit, contact us at 800-225-6495 or email awareness@msfocus.org.

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msf_staff
23 February 2012 @ 12:33 pm
National MS Education and Awareness Month 2012  

March is just around the corner, which means one thing for the MS community and the Foundation –National MS Education and Awareness Month (NMSEAM) is kicking into full gear. From fundraisers to passing out awareness kits, the key this month (and all year long) is spreading awareness throughout the community about what MS is and how it affects those that are living with it.

Each year we come up with a theme and initiative to help spread awareness by engaging the MS community. Our Awareness Committee put on our thinking caps and came up with a pretty great theme for 2012, (drumroll, please)…”At Your Best with MS.” While many ideas were in the running, we chose this one because we felt it was incredibly important to encourage people with MS to do everything they can to maintain the BEST quality of life possible with the disease.  Only you know how this may apply to your own life with MS, but for many people, being “At Your Best with MS” means adhering to medication plans, eating healthy, keeping fit, finding hobbies and interests that bring pleasure, developing a support network, maintaining good emotional health, and continuing employment when possible.

With the theme decided upon, we needed to come up with an initiative that allowed you to showcase how you are “At Your Best with MS,” and how as you journey through life, you discover that you can do some things better than other things. Thus our 2012 initiative was born – “Show us Your Best.” Embracing your creativity with an essay, poem, video, etc., we want to know what you do well and how you use your best to help the MS cause. Grand prize winner will receive a cruise for two aboard the MSF’s Cruise for a Cause 2013.

We always look forward to NMSEAM because it is a time for the MS community to band together to bring awareness of MS to the forefront.  So please join us this year in showing the MS community your best! For more information on how you can get involved or to request an awareness kit, contact us at 800-225-6495 or email awareness@msfocus.org.

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Current Location: Fort Lauderdale
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msf_staff
27 December 2011 @ 10:20 am
MSF Social Media Updates and More  
Told you we would be back shortly! Since it’s been awhile, we just wanted to catch everyone up on a few things:

In social media news, you can follow the MSF on Facebook, Twitter, and YouTube. If you are part of the Facebook community, check out our new non-profit page. It is updated daily with all the latest news, information, and resources about MS and the Foundation. In addition to Facebook, you can also follow us on Twitter (@MS_Focus). We are in the process of updating our YouTube with new videos, but check back often because we’ve got some good ideas in the works. So if you haven’t joined in on our other social media outlets, we would love for you to click that “like” or “follow” button!

Another exciting note in the world of the MSF is that we have joined Sharecare.com. Sharecare is an online provider of health and wellness information which was created in 2010 by Dr. Mehmet Oz and Jeff Arnold, in partnership with Harpo Studies. This collaboration will allow the experts from the MSF advisory board to share their knowledge and answer questions on symptom management, employment issues, diet and exercise, and much more. Got questions about MS? Find your answers at the MSF Sharecare page.

The 2012 MSF Cruise for a Cause has been announced and reservations are being accepted! We will present another amazing educational opportunity at sea on a 7-night Western Caribbean Cruise aboard Royal Caribbean’s Freedom of the Seas, departing from Port Canaveral, FL. Ports of call include Labadee, Haiti; Falmouth, Jamaica; George Town, Grand Cayman; and Cozumel, Mexico and information can be obtained by contacting Palm Beach County Cruise and Travel, Inc. at 877-460-9987 or at http://www.getinthegameusa.com./

And as we mentioned in the previous post, on December 3rd, 2011, we celebrated our 25th Anniversary in Hollywood, FL. It was a wonderful evening that raised proceeds that go directly to MSF programs and services. Here is a short video documenting the night!

Oh, and Happy Holidays and New Year from the MSF!
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msf_staff
13 December 2011 @ 12:55 pm
Welcome Back!  

And we’re back!!! Sorry we took a brief hiatus, but things have been pretty happening around the MSF. First, we moved into a new building! Hooray! This was an incredibly exciting change. While moves are always hectic, we achieved it with great success. It has really helped to streamline our operations, which provides more growth potential for years to come. But don’t fret because while our exterior may have changed, you can still find the same dedicated MSF employees on the inside.

In addition to the move, this Fall also marked a major milestone for the MSF. We turned 25!!  We celebrated our anniversary with of course a big bash (pictures to follow shortly) that went over amazingly well. Our special honoree was Dr. Ben Thrower, MSF Senior Medical Advisor and Medical Director of the MS Institute at the Shepherd Center. It was a wonderful night and we raised over 65,000 that will go directly to our programs and services.  

The MSF has been serving the national MS community since 1986, and we are excited to continue to serve you with even more programs, educational opportunities, and resources in 2012 and beyond. Stay tuned for more posts!

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msf_staff
01 March 2010 @ 05:39 pm
National MS Education and Awareness Month is Here!  
And what an exhausting day it has made! I'm recovering from a cold today so I've been working from home, trying to spread the word about everything we've got going on for NMSEAM. I had so much I wanted to say about it here when I first thought about it this morning, but you all will forgive me if for now - ten hours later - you just get the bare bones (i.e. the links)!

Huh, now that I think of it, you may just be thankful for that. :-)

* A new class of MSF Ambassadors will be selected. See the application for full details.

* Two national teleconferences will take place. Here are the details about the Maximizing Mobility teleconference, and here are the details for the conference on Staying Open to Change.

* Eight regional educational programs are scheduled. See this announcement to find out if there's one near you.

* Free MS Awareness Kits are available. Order yours here or click this link for a photo of what's inside. (See also the Get Involved page to learn about this year's initiative and how you can win a free t-shirt and/or be featured in MSFocus.)

* On the Facebook NMSEAM fan page and on our Twitter page we'll be sharing a fact about MS every day of the month, and asking people to pass that fact on to their networks. If you're on FB or Twitter, please think about following us there.

* Over the course of the month, as the inspiration strikes me, I'll be having a few quick (one day at most) t-shirt contests. So keep an eye out here (on LJ & DW), or on the aforementioned FB and Twitter pages.

That's all I can think of for the moment, all though I'm sure I'm missing a number of things. Please let me know what you think of these ideas, and if you have any suggestions for MSF, now or for the future of NMSEAM.
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msf_staff
28 January 2010 @ 01:19 pm
Random news and links  
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 msfocus.org once the program cycle officially begins.

National MS Education and Awareness Month is coming up quickly too. More about that soon!
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msf_staff
20 October 2009 @ 09:59 am
Is the Flu Shot Safe for People with MS?  
I know this is an issue on everyone's minds right now, so I thought I'd reprint this from the news section of our website.

Is the Flu Shot Safe for People with MS?
10/19/2009

Editor’s note: In this news brief, MSF Senior 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.
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Current Location: MSF HQ
Authored By: Kasey
 
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msf_staff
08 October 2009 @ 01:59 pm
Mental Illness Awareness Week  
This week (October 4-10) is Mental Illness Awareness Week in the U.S. Coincidentally, we are just putting to bed the latest issue of MSFocus (due in mailboxes later this month), the theme of which is on mental health for people with MS. Why is this an issue?

First of all, because having MS does not exclude you from having any other illness, including mental illness. According to the National Institute of Mental Health, an estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in any given year. They estimate that only 6 percent of those are "serious" mental illnesses, but if you are the one experiencing it, it's "serious." to you.

Moreover, some researchers believe there may be a connection between MS and bipolar disorder, as it appears that bipolar disorder is unusually common among those with MS. This connection isn't proven, but the increased prevalence has been noted.

Then, of course, there's the issue of depression. Depression is an illness that's intimately married with MS. Whether it's pre-existing before a diagnosis of MS, an MS symptom caused by the disease process itself, a side effect of MS medications, or an emotional and physiological response to the stress of dealing with a chronic illness, the fact is that the majority of people with MS will experience depression at some point. It needs to be taken seriously, and it needs to be treated.

This is an area where we cannot afford stigma. Depression can create or aggravate pain, fatigue, cognitive impairment, and a host of other MS-related symptoms. In that light, while it may not be advancing the disease process, you could certainly say that depression makes MS "worse."

Don't allow that to happen to you or someone you know with MS. Treat depression as what it is: a common part of MS that has to be faced. Address it head-on and get treatment. There's help available, if only you make the choice to seek it!
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Current Location: MSF HQ
Authored By: Kasey
 
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msf_staff
23 September 2009 @ 07:57 am
A Cognitive Conundrum  
In a teleconference she did for us way back when, our resident expert on managing cognition problems said that when technological or physical reminders fail you, you have to depend on "human reminder services," i.e. someone who will tell you when you've forgotten something important. Since I often forget to charge my pda or read notes that I leave myself, I rely on human reminder services quite a bit. In fact, most people on our staff know they have blanket permission to nag if they think I'm forgetting something.

This morning, however, my human reminder service was a police officer.

I was returning home after driving my youngest son to school (in my pajamas, of course, because that's when something like this is bound to happen), and a police officer instructed me to pull over. The conversation went like this:

Officer: Good morning, ma'am.
Me: Good morning. What seems to be the trouble, sir?
Officer: Are you aware you're driving on an expired tag?
Me: What?!? No I'm not!
Officer: Yes, ma'am. According to the computer you are.
Me: That's not right. I went down to the tag office myself a few weeks ago.
Officer: Can I see your new registration then, please?
Me: Sure, it's right here in the.... Oh. Oh, no!

You see, I remembered clearly visiting the tag office. I remembered clearly removing the sticker from the new registration and affixing it to the tag. What I did not remember was that the tag I affixed it to was attached to my husband's vehicle, not mine. I was recalling having renewed his tags in July, not mine in August as I thought.

I explained to the officer what had happened (without mentioning that I have mild cognitive dysfunction) and he said, "These kind of oversights happen." But was it an oversight? Or was it a function of my fibro-fog? (That's what we fibromyalgia people call our cognitive symptoms.) There's the conundrum. We never really know, do we? That's what makes it so irritating when 'normal' people say, "Oh, I forget things like that all the time!"

Frustrating as it is, I have to accept that I will never have an answer to that question. So I simply have to adapt. Cognitive symptom or oversight, I just need to make sure it doesn't happen again.

So I really don't mind the $10 ticket. If I hadn't been stopped, I never would've known my memory was playing tricks on me. And it gave me a reason to think about the way my husband and I divide these sorts of responsibilities and that perhaps it's time for me to turn over the more time-sensitive tasks to him. If I have a choice between my husband or a police officer for a human reminder service, I'll choose husband, thanks!

The MSF has some terrific info on coping with cognitive symptoms -- our own booklet, and several books in our free Lending Library. Check out our website to learn more. And our partners at the MS Technology Collaborative have launched cognition-building games at http://www.mymsmyway.com.

Meanwhile, you can make me feel better! Care to share a crazy cognition story of your own? (Remember, you can comment anonymously if you want or use openID to sign in from your own blog if you're not a member here.) Please, let me hear 'em!
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Current Location: my sofa
Authored By: Kasey
 
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