7 great things accomplished by patient powered iConquerMS

I am so delighted to share that the iConquerMS initiative has made a lot of progress these last few months. Membership keeps rising and a lot has been achieved in a short time. What a great team to be a part of!

The focus continues to be facilitating research on stuff that matters most to us, folks living with Multiple Sclerosis. And, it involves MSers across the entire process: idea building, collaboration, protocol development, project results, and sharing of final research results.  Pretty cool, right?

So, I thought I would share some of the recent highlights. Here are seven great things accomplished by iConquerMS so far:

1. Launched the new data collection and patient engagement portal
2. Registered over 2,250 people living with Multiple Sclerosis
3. Collected a lot of health data – from about ½ of those registered
4. Garnered support from MS clinics, neurologists, MS nurses, MS advocacy organizations, pharmaceutical companies, and collaborators
5.  Created its first research project that will focus on how folks with MS get insurance coverage
6. Collaborated with PPRN (patient powered research network) on a study proposal to examine the effects of depression, anxiety, and other mental health issues in folks with Multiple Sclerosis
7. Planned four ‘Research Studios’ events, which will bring together small groups of MSers and researchers to brainstorm on research topics. These are scheduled to launch this fall 

Of course that’s not all as the full list of accomplishments is much longer. Also, several research projects are underway, all at different stages of planning and ideas keep coming in from those MSers registered - teams are very busy!

iConquerMS puts people with Multiple Sclerosis at the center of research in the fight against MS. We’d love for you to be a part of this so please join us today by clicking on the link here: https://www.iconquerms.org .

Take care,

Christie

Perhaps I am stronger than I think

Perhaps I am stronger than I think. Thomas Merton

The day I met Jack Osbourne

A couple of weeks ago, we had the honor of traveling up to LA to attend the Race to Erase MS Spring Forum and Expo on behalf of iConquerMS. We drove up the night before and stayed in the same hotel where the 22^nd Annual Race to Erase MS Gala was happening.

Everything was a buzz as guests arrived for the Gala that night. With the hope to catch a glimpse of some Hollywood stars, we hung out in the hotel lobby bar to watch the action. As you might guess, the excited noise of laughter, chatter, music, and clinking of glasses filled the hallways.

We saw a few stars come through the crowded lobby and head out to the orange carpet: Lea Thompson (of Back to the Future fame), Anne Heche, who later introduced the live auction which included a gorgeous 2015 Aston Martin V8 Vintage GT (vroom, vroom!), Ne-Yo the rapper (truth be told, we didn’t really know who he was, just got the sense that he was famous due to the patrol around him), Rumer Willis, and, Tommy Hilfiger, who was the event’s Honoree. Eventually, we tried to sneak down to the orange carpet area but it was impossible to see anything as the Osbournes had just arrived when we did. Flash bulbs and people everywhere!

We later learned that over 1,000 people attended the event with tickets ranging from $1,000 - $2,500. The car? It went for $150,000! All together, the event raised $1.7M with proceeds going to MS research and therapies. That’s pretty awesome.

The next day was our chance to talk about the importance of iConquerMS and meet so many wonderful people. This includes Nancy Davis, the founder of charity event and Race to Erase MS, and Jack Osbourne, who was on the Spring MS Forum panel. Later, I pretty much chased Jack down like a crazy person as I caught him briskly walking through the hall but he was really, really cool about it, especially once I introduced myself as a fellow MSer. He was nice to snap a photo with me and kept it real as I thanked him for being so honest on the panel about his positive attitude despite bouts of occasional depression.

Here are some shots of the event and notes about the pictures. Starting on the bottom right corner going clockwise and finishing in the center square:

1. Anna on the orange carpet at the Race to Erase MS Gala
2. The amazing panel, including Nancy Davis and Jack Osbourne, who covered topics such as the latest therapies for MS and engaged in an open dialogue about depression. Did you know that 50% of MSers are clinically depressed? And that the third cause of death with MSers is suicide, due to depression? We need to talk about this more
3. Anna has the power to conquer MS – yeah!
4. At the iConquerMS table, spreading the good word
5. Me and Jack O. I appreciated his candidness during the panel discussion of depression amongst MSers. He talked about times when he enters the “jar of shadows” yet encouraged everyone to be positive and live a healthy lifestyle
6. On the orange carpet with my limited edition Top and Derby Chatfield walking stick in MS orange
7. Surrounded by MS orange balloons at the Spring MS Forum and Expo
8. I, too, have the power to conquer MS
9. We were pretty excited to step out onto the orange carpet although all the stars already left the area by the time we snapped this! (center photo)

It’s fairly obvious that we had a great time and look forward to next year. Who knows? Maybe you will see the two of us actually walk the orange carpet, amongst the stars, as we all work towards curing Multiple Sclerosis.

If interested in supporting Race to Erase MS via the “Orange you Happy to Erase MS” campaign this month, check it out here: http://www.erasems.org/may-ms-awareness-campaign/. Proceeds of the campaign go towards some of the nation’s top MS research centers

To join the iConquerMS initiative, register on the site here: https://www.iconquerms.org/. Submit your ideas, information, and become part of the heart and soul of iConquerMS.

Take care everyone,

Christie

LA artist raises awareness about MS through gorgeous mural

I recently came across this CBS report that highlights LA artist Lydia Emily. Lydia created this amazing mural in downtown LA, hoping to spread awareness about living with Multiple Sclerosis.

Have a watch and be prepared to be inspired!

You’re invited to share your MS inspired tattoo with Healthline.com

Getting inked can be a powerful reminder that you are stronger than your MS, and a great way to raise awareness. While I don’t have a tattoo myself (reason being is that I cannot decide for the life of me what to ink myself with – I am forever contemplating the perfect design), I think what our friends over at Healthline are doing is pretty cool. They are hosting the “My MS tattoo” campaign and are looking for tattoos inspired by your fight with MS.

Here’s how to participate:

• Send a clear photo of your tattoo (at least 285x285 in .jpg or .png format) to nlascurain@healthline.com with the subject line “My MS tattoo” by April 17, 2015
• In 90 words or less, describe the inspiration behind your tattoo
• Please identify if you'd like your name published or not
• Healthline will then publish them and share with their Facebook community

When describing the inspiration behind your tattoo, think about these questions: What does it mean to you? Why did you decide to get the tattoo? Was there anything special that motivated the design?

Have fun and I look forward to seeing your MS inspired tattoos out on Healthline.com. Perhaps seeing yours will inspire me to finally decide on what my tattoo should look like! 

Take care,

Christie

P.S. check out these tattoos, inspired by MSers journey and fight against Multiple Sclerosis: 

http://www.healthline.com/health-slideshow/multiple-sclerosis-tattoo-winners#2

Call your neurologist on Monday morning and ask for guidance on Vitamin D

There was a common theme at a couple of events I attended recently yet what I heard was nothing new to us, especially if you are reading the news, set up on Google Alerts for Multiple Sclerosis, and hanging out in social media chat rooms. What’s the advice from our favorite neurologists, professors, nurses, MSers, and friends of the MS community?

If you live with MS and are not already taking the "sunshine vitamin", call your neurologist on Monday morning and ask for guidance on Vitamin D.

The benefits of the sunshine vitamin have been talked about for a while and if you cannot relocate to sunny San Diego to absorb more sun rays, it is certainly worthwhile having a conversation with your neurologist about how much Vitamin D to take. Me? I take 50,000 U every week, as prescribed by my awesome neurologist. He monitors me closely and we talk about Vitamin D each time we visit together.

If you cannot relocate to sunny San Diego to
absorb more sun rays, call your neurologist
to talk about the "sunshine vitamin"

More and more research is pointing to the fact that low levels of Vitamin D in our blood is a risk factor for developing MS. Conversely, studies show that in MSers, high levels of Vitamin D may be linked to lower chances of attacks and less severe disability[i]. This sounds amazing to me!

Additionally, it has been suggested that Vitamin D deficiency may impact bone health, as MSers are more prone to osteoporosis. Another concern? MS associated weakness may be associated with low levels of Vitamin D. Also, there’s some talk that low levels of Vitamin D could worsen MS disease process.

I got these bits of info from the “Vitamin D and MS: Implications for Clinical Practice bulletin put out by Allen C. Bowling, MD, PhD via the National Multiple Sclerosis Society (NMSS). Have a read as it contains great info about Vitamin D deficiency, the effects on MS, costs associated with the “sunshine vitamin”, and what to do in clinical practice.

This all being said, incorporating Vitamin D into your life is certainly worth exploring.

5 easy steps to take when considering Vitamin D:

1. Call your neurologist on Monday morning to set up an appointment
2. Read the bulletin about Vitamin D and MS (here) - empower yourself with knowledge
3. Get your blood levels of Vitamin D checked with your neurologist
4. The blood tests and Vitamin D prescription should be covered by insurance yet it’s worthwhile calling your provider to ensure coverage
5. Once on a Vitamin D regimen, monitor, monitor, monitor by working closely with your neurologist. She/he will evaluate your blood levels and give guidance on how much Vitamin D to take

Of course, everyone’s case of MS is different so it is very important that you have discussions with your neurologist about how best to incorporate (or not) Vitamin D into your lifestyle. We know more studies are required to truly understand the fact-based benefits of Vitamin D and several researchers, doctors, et al are seriously committed to analyzing this relationship between the “sunshine vitamin” and Multiple Sclerosis.

I hope this post helps you in your journey.

Take care,

Christie

---

[i] Allen C. Bowling, MD, PhD , “Vitamin D and MS: Implications for Clinical Practice”, Clinical Bulletin via National MS Society

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

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:

http://www.news-medical.net/news

http://www.prnewswire.com/news-releases

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

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

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

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