Sunday, March 1, 2015

Now you can have a gorgeous cane and support Multiple Sclerosis awareness!

"Canes for a Cure" from Top and Derby
My friends over at Top and Derby have done it again. They’ve gone ahead and made another gorgeous, design inspired cane. This one is truly special because it is a limited edition Chatfield cane featuring the color of Multiple Sclerosis – Pantone 158 (or, in other words, MS orange!), just in time for the kick off of Multiple Sclerosis Awareness Month that began today. Know what’s even better? These are “canes for a cure” as proceeds from each sale will be supporting research and awareness for Multiple Sclerosis.

These guys are awesome. I just love ‘em.

Here’s the deal with the canes and the launch:
  • Only 200 were made. The Limited Edition Chatfield cane features MS orange (Pantone 158) with custom packaging and laser engraving. The same comfort, stability, and design of the original Chatfield still applies! 
  • Buying the limited edition cane supports their “enable” mission promoting “canes for a cure” as the tag-line in an effort to raise money for MS awareness and research. Proceeds from the sale of each cane will go directly to the MS societies in Canada and the US. Top and Derby already issued a press release covering this (here) and have really stepped up in this awareness campaign.

Let’s come together to get the media talking about Multiple Sclerosis, educate the general public about MS, and raise some money for the cause. These are the main reasons that Top and Derby created the limited edition cane in MS orange.  Many people who have purchased their lovely canes live with Multiple Sclerosis and this is their way of giving back, showing support, and spreading the love. As Matt, the Creative Director over at Top and Derby, says in the press release, “…launching the cane is the least we could do to support those who’ve supported us.” Hugs Matt!

The canes are now available on Top and Derby’s site (here). They include a sizing chart feature to ensure a proper fit. Measure twice, order once!

And, please share some photos if you end up buying one! I’d love to see you strutting around town with your new orange cane. I will do the same and will post images soon. Feel free to share photos on Twitter, Facebook, and/or Instagram using the hashtag #canesforacure

Thanks and be well.

Christie

Saturday, February 28, 2015

Orange is the new black via the #Orange4MSF campaign

Multiple Sclerosis Awareness month kicks off on March 1 and there is no shortage of awareness campaigns out there. The first one that caught my eye is the #Orange4MSF campaign which invites everyone to take a selfie with an orange. Why an orange? Orange is the official color of Multiple Sclerosis awareness and we’re really amped to make orange the new pink, the new black.

The Multiple Sclerosis Foundation (MSF) launched this fun effort and its main mission is to spread the word about Multiple Sclerosis, educating the public and building hope for those living with this often debilitating and complicated neurological disease.  We all hope that the campaign goes viral as social media channels explode with this important message.

And, you can help! Show your support by snapping a selfie with an orange and then sharing it on Facebook, Twitter, and Instagram. Be sure to use the hashtags #Orange4MSF and #4MSF in your posts. Let’s build hope and let’s educate.

Mine’s coming soon so stay tuned!

Take care and be well,
Christie

For more information, check out these sources:

Sunday, February 15, 2015

If I can bicycle, I bicycle


Cycling is something that brings me pure joy and helps me forget that, if even for a few moments, that I am someone living with Multiple Sclerosis. For me, that can be one of the greatest benefits  – not to be consumed by life with a chronic illness as I fly by the ocean waves, pedaling as hard as I can, on my bicycle. It is pure happiness.

Certainly there are days when I cannot ride, those days when the fatigue kicks in full blast. I simply rest through these moments, reminding myself that tomorrow is a new day and on that new day, if I can bicycle, I bicycle.

Take care,
Christie

Thursday, February 5, 2015

iConquerMS™: Our Voices. Our Data. Our Power.

Hey everyone -

iConquerMS has been hitting the national scene and invites you to participate in this incredibly important research project. If you want more information, there is a great (and free!) webinar coming up on February 9th that explains it all. Hope to "see" you there.

Check it out:
On Monday, February 9, 2015 at 2:30 PM EST, Robert McBurney, PhD, President and CEO of the Accelerated Cure Project for MS and the Principal Investigator for iConquerMS™, and Laura Kolaczkowski, the Lead Patient Representative for the initiative, will talk about iConquerMS™ and what it means for the MS community. To sign up, register here.

In the meanwhile, here is a video that highlights how important our voice is, how important our data is, and how important our power is in our journey to fight Multiple Sclerosis and to eventually land on that cure. And, in the event that you'd like to read more about iConquerMS, check it out here.



iConquerMS - Our Voices. Our Data. Our Power.

Best to you always,
Christie

Wednesday, January 7, 2015

Just for fun on a (somewhat) wordless wednesday

© The Graphics Fairy 2007

Nothing compares to the simple pleasure of a bike ride.
John F Kennedy







Cheers to more bike rides in 2015! 

Happy New Year friends.

Best always,
Christie

Sunday, January 4, 2015

9 cool things that happened in 2014 for treatment and prevention of MS

I am not a doctor nor do I play one on TV. Before trying anything listed below, please consult with your physician or neurologist. Further, this recap is based on info I gathered from exploring other websites including the National Multiple Sclerosis Society’s “Strides Made in 2014 Toward a World Free of MS” published early last month. Be sure to check it out in its entirety because the list of accomplishments is long – hurray for our fight against MS! 

2014 was a pretty great year for those of us living with Multiple Sclerosis. So many amazing things happened in our journey towards treatment and prevention of the disease. We’ve got more drug therapy options, saw great studies come out on myelin repair, identified risk factors for developing MS, and even learned that dance therapy may help those of us living with Multiple Sclerosis.

Without further ado here are 9 pretty cool (and important) things that happened in 2014 for treatment and prevention of MS:

There are now 12 disease-modifying treatment options for those living with RRMS. This is up from 10 options about a year ago. The FDA approved Plegridy and Lemtrada in 2014. This is pretty remarkable because it was not long ago when the choices were so few. Plegridy is injected under the skin every two weeks and designed to lengthen the effect of interferon. Lemtrada is a bi-annual infusion option for those seeking therapy after other MS drugs did not reach desired results. Oh, and the FDA also approved a new and improved Copaxone allowing MSers to inject three times a week vs. every single day. That’s a pretty big win.

Infusing with one of the 12
DMTs now available to
MSers - Tysabri
Statins show promise in slowing brain atrophy in those living with SPMS. Based on trials, this cholesterol-fighting drug slowed the rate of brain atrophy by 43% vs. placebo over a two-year period. Fingers crossed that more studies like this continue and help those living with SPMS.

Smoking continues to be bad for MS health. Building on other studies, researchers in the U.K. found that for every year since quitting smoking, the risk for MS progression reduced 5% (for those living with MS). So glad I quit smoking those many years ago. Cheers to that!

The sunshine vitamin continues to help those living with MS. An international study helped show that analyzing Vitamin D serum levels in early MS may help predict future disease activity and progression. And, those in the study with higher levels of Vitamin D had reduced disease activity and progression vs. those with lower levels. On a personal note, I am on a Vitamin D program prescribed by my neurologist as he feels my levels are too low. Wish me luck for improvement!

There may be something to cod liver oil, too. Studies show that those who took cod liver oil, a source of Vitamin D, during the ages of 13-18 had 50% reduced risk of developing MS (vs. those who never took it or took it at other ages).
Did you know the sunshine
vitamin may help in predicting future
disease activity and progression? 

Researchers continue to explore ways to repair damaged nervous systems. Very smart people all over the world continue to analyze compounds, antibodies, stem cells, molecules, and other elements to find ways to repair myelin damage. Check out the NMSS site linked (here) for more info on these important studies.

Our health data has power! iConquerMS.org is now live and is putting MSers at the center of research in our fight against MS. This is an incredible project that will use health data to help those living with Multiple Sclerosis and to find that eventual cure. Check it out (here).

Taking up Salsa lessons may help MSers. Studies show that the Salsa dance form helps with gait and balance issues for those of us living with Multiple Sclerosis.  Larger studies are being developed now to see how dance can be incorporated into physical therapy programs for MSers. Everybody Salsa!

Biogen hands out Fitbits to some living with Multiple Sclerosis. Biogen hopes get useful data about the progression of the disease and lead to better treatments. To do so, they gave out 250 Fitbit bands to MSers and will analyze mobility and sleep patterns. Read more about it (here).

The list of accomplishments, trends, and other important elements from 2014 is much, much longer than what’s listed above. Please be sure to check out the resources featured at the bottom of this page for more information about everything that is being done for treatment and prevention of MS.

I hope the new year is good for you and yours.

Best always,
Christie

Sources:
“Multiple Sclerosis Year in Review”, Neurology Advisor, 2014 http://www.neurologyadvisor.com/multiple-sclerosis-year-in-review/slideshow/2349/#1
“Strides Made in 2014 Toward a World Free of MS”, National Multiple Sclerosis Society, December 9, 2014 http://www.nationalmssociety.org/About-the-Society/News/Strides-Made-in-2014-Toward-a-World-Free-of-MS

Wednesday, December 10, 2014

I'm conquering MS, 'wanna join me?

From time to time groundbreaking stuff happens on the planet that gets us really jazzed up and the launch of iConquerMS.org is no exception. As someone who lives with Multiple Sclerosis, this project is so very near and dear to my heart and I am super proud to be part of iConquerMS team and watch this go live.
So, you might be wondering, “Who/what exactly is iConquerMS.org?”

iConquer MS.org is a patient driven initiative that focuses on using ‘big data’ in the form of research suggestions and health data, to tackle all kinds of issues important to the MS community, including finding that cure.

Via an online portal, MSers will register, contribute information, and suggest ideas for research. Researchers will then review the idea, analyze the data, and gain important insights on varying aspects of Multiple Sclerosis. This MSer: Researcher collaboration may lead to better diagnostic procedures, treatment recommendations, and the ultimate goals of preventions and cures.

Yes! Throw confetti in the air!


After spending some time with the iConquerMS.org team, doing a bit of beta testing on the site, and registering myself, I am getting more and more excited about this project. Here’s why:
  • iConquerMS.org is driven by folks living with Multiple Sclerosis. Yep, we’re steering the MS research ship. iConquerMS.org is an initiative by and for folks like us, living with MS, who truly understand the unique needs of MSers and want to contribute ideas and health data to fuel research. I love this because it’s patient driven, not a bunch of folks wearing goggles and white lab coats while holding test tubes in a back room laboratory, as my friend Stephanie Butler would say. 
  • iConquerMS.org will really focus on the MS issues that matter most to us because research questions will be raised by the MS community. These questions may include: what causes the disease and what strategies might prevent it, cure it, or slow its progression; which treatments work best in which individuals; what factors affect the progression of the disease; and what insights can be found to enable new and more effective treatments to be developed. Yes! More confetti in the air!
  • Things may actually move along faster. Advances in research may occur sooner as MSrs play a more active role by facilitating the use of our most personal asset – our own data, including lifestyle habits and health histories.

Please join us in this new way to fight MS. Let’s speed things up. Let’s use “big data” to truly make an impact. Let’s work closely with researchers to get closer to what matters most to us. Let’s work together on this important journey.

Simply go to https://iconquerms.org and click the “join now” button.

By the way, this amazing project is backed by all kinds of respected groups including: National MS Society (NMSS), and the Multiple Sclerosis Association of America (MSAA). And, Accelerated Cure Project for MS (ACP), Feinstein Kean Healthcare, and Arizona State University, and Patient Powered Research Network. Pretty hefty support.

Take care,
Christie

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