Consortium of MS Centers Annual Meeting – Day 1 Recap

Greetings from Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting!

Peter Damiri at the MSAA booth for CMSC 2013

Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

This week (May 29- June 1, 2013) I have the pleasure of attending the 27th CMSC Annual Meeting. It is easy to get into the mindset that the MS community is small – after all, it is always mentioned that MS is a rare disease. However, the CMSC Annual Meeting is a great example of just how many people care about issues related to the multiple sclerosis (MS) community – from the neurologists and nurses who practice in the MS clinics, to the social workers, patient advocates, and non-profits dedicated to MS. The CMSC meeting is a reminder that many people have dedicated their lives to altering the future of individuals diagnosed with MS, to try and ensure a better future.

Today (May 29), Dr. Robert Herndon provided an introductory speech welcoming everyone to the conference. He gave an overview of MS called “60 Years of Advancement In MS Management.” He explored just how far research has come since 1950 both in terms of the changes in the diagnostic process, “dogma’s” of the time period about MS, and major advances in treatment. It is astounding to think of just how far we have come even though we have a way to go. The dedication of the professionals in the room was apparent, this is an important cause and one that 1,800 attendees at CMSC believe in.

Of the many other programs available today I was also able to attend an educational session called “Pain in Management in MS” with speakers Karyn Seebach, PsyD and Heidi Maloni, PhD, ANP-BC-MSC. Dr. Seebach spoke about psychological approaches in MS pain management, and Dr. Maloni provided an overview of MS pain management and also the controversial cannabis use in MS pain. Many strategies were discussed including looking at the whole person and treating pain as a complex issue which requires a “biopsychosocial” approach (biological, psychological, and social approach). To read more about MS pain management please see our recent issue of The Motivator.

Tomorrow there are a number of other engaging programs, so stay tuned for another CMSC recap later this week!

Peter Damiri at the MSAA booth for CMSC 2013

Another shot of Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

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World MS Day 2013

Wednesday, May 29, 2013 is World MS Day.  To mark this occasion MSAA will be participating in a Twitter Chat with Healthline at 11 AM today. To join the chat please visit:http://www.healthline.com/health/27487.

To help raise awareness of what it is like living with multiple sclerosis the Multiple Sclerosis International Federation created a video of six inspiring young people from around the world have shared their mottos for identity, relationships and the future.

What’s your Motto? from World MS Day on Vimeo.

MSAA encourages to show your support for World MS Day and inspire the world by sharing a motto that gives you strength, even in the most challenging of times.

 

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Latest Issue of The Motivator Now Available!

Read about the following topics in MSAA’s latest issue of The Motivator:

Cover Stormotivator winter_spring 2013y:
* The Hidden Symptoms of MS
This article describes some of the hidden symptoms of MS (including pain, fatigue, sleep, cognition, and vision), along with management strategies.
Read the full story

Research News:
* American Academy of Neurology Meeting Highlights
* Tecfidera™ Approved for the Long-Term Treatment of MS
Read the full story

Health and Wellness:
* The Affordable Care Act and You
The Affordable Care Act (ACA) aims to increase the availability and affordability of health insurance for millions of Americans who lack coverage. Beginning in January 2014, this historic initiative will significantly impact a substantial number of individuals with multiple sclerosis and their families.
Read the full story

Already receive a printed copy of The Motivator magazine in the mail? Interested in receiving The Motivator electronically only? Let us know! Please visit support.mymsaa.org/motivatorupdate.

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Swim for MS Update – May 2013

Summer is almost here! Start to plan your summer Swim for MS event today!

Looking for some ideas for your summer Swim for MS, consider these options:
1.    Host a summer pool party for Memorial Day weekend!
2.    Set a goal to swim 500 laps throughout the summer to raise $1,000!
3.    Create a pool volleyball tournament with your friends!
4.    Participate in Swim for MS and pledge to swim 100 laps and improve your fitness by the end of summer!

MSAA’s Special Swim for MS May Prize…is a Modify Watch!
Anyone who registers for Swim for MS will be entered to win a Modify Watch! Modify Watches are interchangeable watches allowing an individual to mix-and-match faces and straps to create the “Mod” that best suits you! Browse the Modify Watches blog for more information on their nonprofit collection and how to purchase a “Together” watch.

Please note: participants must register during the month of May 2013 (5/1/2013 through 5/31/2013) in order to be eligible. The winner will be announced via email in the June 2013 edition of the Swim for MS News e-newsletter.

The May 2013 Winner is…
Missy Franklin Autographed Photo:
Congratulations to Laurieann Hart for raising $1,220 through Swim for MS in the month of April!

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Lesson from a Mom with MS: You’re Stronger Than You Think

By Hannah Cusworh
2013 Swim for MS Participant

You’ve heard of all the banal platitudes like “Never take ‘no’ for an answer,” “If you fall off the horse, get right back up,” and ”When there’s a will, there’s a way” – I’m almost certain my mother coined all of those phrases.

My mother was diagnosed with multiple sclerosis (MS) at a young age when she started losing vision in one of her eyes. Fortunately that symptom subsided and she continued living her life as she intended. Four kids and a few decades later, the disease awoke again with a force to be reckoned with. Our warm summer beach vacations were moved to cool mountain ranges in order to minimize her exhaustion. Our Sunday afternoon bike trails shortened. Our floor-level card games moved to higher ground. Afternoon rests became a daily routine. Our everyday Mom activities had changed forever. At least that’s how I saw it.

My mother, on the other hand, never let that be the case. She never sought out pity from others, she never asked for help. Anything we did before, she’d find the strength to do it in her own new way. She wasn’t going to take “no” for an answer, she got back up on her horse, and she found a way. Yes, her everyday mobility has shifted towards a slightly different way of living, but life hasn’t changed.

While many cases of MS can be much more debilitating than the one my mother battles, I encourage those suffering from this life-changing disease to maintain the strength my mother has shown me. In honor of her continuing battle and as a tribute to her perseverance, this April I took on a personal “Swim for MS” challenge to swim 500 laps and raise $1,000 in 30 days. Sound hard? Not when you have this kind of inspiration.

Read more about Hannah’s Swim for MS on her webpage today!

 

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Highlights from the American Academy of Neurology’s Annual Meeting

The American Academy of Neurology’s (AAN) 65th Annual Meeting took place in San Diego, California in March. This large medical conference presents the latest findings in research and treatments for neurological conditions, including multiple sclerosis (MS). MSAA has compiled important highlights from the meeting in the following article on mymsaa.org: https://www.mymsaa.org/news-msaa/871-aan-highlights-2013

 

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Four Days Left

As April comes to a close, so does MSAA’s partnership with Modify Watches. In a previous post we announced for the month of April MSAA is the beneficiary of Modify Watches’ “Together” watch.

Modify will be donating $20 to MSAA for EVERY “Together” watch sold during April (even for members of their Mod of the Month Club who are receiving a 20% discount). If you would like to purchase a Together Watch to support MSAA visit Modify’s Non-Profit Collection.

modify watch
 

 

Please share with your friends and family today! Support  MSAA  today with the Modify “Together” watch!

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Swim for MS Updates – April 2013

MSAA is excited to share several updates on Swim for MS.

National Volunteer Week and Global Youth Service Day

Are you looking for a way to get involved with a great cause or receive volunteer hours? National Volunteer Week is April 21-27 and Global Youth Service Day is April 26-28! The theme this year is Celebrating People in Action.

How You Can Get Involved

During National Volunteer Week or Global Youth Service Day, take the pledge to Swim for MS and spread awareness in your community! Here are some ideas:

  • Pledge to swim 100 laps or jump 250 cannonballs and raise $250.
  • Pledge to distribute 50 Swim for MS brochures in your community*.
  • Pledge to ask 10 local stores to post a Swim for MS flyer on their window or on a wall*.
  • Contact your local community pool and set up a one-day Swim for MS event, such as pool volleyball, a team relay race, or a pool party.

*If you will be distributing flyers or posters, please submit this form. MSAA will contact you within 24 hours.

Pura Vida Bracelets

MSAA has partnered with Pura Vida Bracelets for MS Awareness! For each bracelet purchased, Pura Vida will donate $1 to MSAA. To get your Pura Vida Bracelet, please visit this link.

CaféPress

Swim for MS has a CaféPress site! Here, you can spread awareness by purchasing a Swim for MS hat, backpack, sticker, car magnet, and more! To view our Swim for MS shop, please go to CafePress.com/SwimForMS!

MSAA’s Partnership with Fitter and Faster

The Multiple Sclerosis Association of America (MSAA) is pleased to announce its new partnership with Fitter and Faster Swim Tour to help promote Swim for MS. Fitter and Faster Swim Tour (FFT) organizes and plans professionally managed swim clinics across the United States to teach and inspire swimmers of all ages and skill levels.

Serving as a distribution sponsor for Swim for MS, FFT will promote it partnership with MSAA to all those who attend their 2013 national clinic tour through flyers and onsite announcements, include the Swim for MS name on each participant’s identification wristband and post ongoing updates on Swim for MS activities to Facebook and Twitter.

And the April Winners are…

Missy Franklin Autographed Photo:
Congratulations to Jacob for raising $1,485 through Swim for MS in the month of March!

Disney One-Day Park Hopper Passes:
Congratulations Matt and Hannah for winning two Disney one-day park hopper passes!

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Anna’s Adventures at SXSW, Part 2

Hello to my friends at MSAA from South-By-Southwest (SXSW)! This is the second installment of Anna’s Adventures! If you missed part one, you can read it here. Now onto part two….

SXSW is over, another mission accomplished in the Wild, Wild, Southwest. From sweaty dust storms at the FADER Fort to getting lost on the back roads of Willie Nelson’s ranch at 2 AM, there are many more stories to tell. Late-night taco truck dining accompanied by a crescent-moon-lit impromptu band showcase on the side of the road and a four-encore small-bar Prince concert at La Zona Rosa in Austin’s downtown. I’ll say it again this year like I did last, SXSW is not real-life. A year’s worth of events can happen all in one day, or it at least seems as such. There is no time to sleep, or watch one band’s showcase its entire way through. Forever young we become, on sensory overload.

While the festival is generally grueling – it, for some reason, always seems to be worth it.

One of the main reasons for continuing to come to SXSW – for me – is the Heartbreaker Banquet. This year’s Banquet fell on the most gorgeous, sun-drenched, temperate afternoon, and lasted through the most glowing, sapphire breezy-skied, chandeliers in the trees, evening.  The Heartbreaker Banquet took place at Willie Nelson’s ranch and it proved to be the oasis and breath of fresh-air festival goers needed to continue on back into the rest of the week of SXSW.  The Banquet provided a venue for watching favorite bands and ones that would become new favorites perform inside Willie’s chapel, in his saloon, and out in the wide-open – in front of his World Headquarters. There was nowhere to go, nowhere to run off to, and we were thankful for it.

For me, I had paradise spilling out in front of me everywhere I turned, a photo creating itself everywhere I looked. I didn’t have to work nearly as hard as I’d dreamed of; everyone was at ease. As the sun set over the expanse of the crowd, it was calming and heartwarming to see that our festival had exactly doubled in-size from last year, and so many of my friends were there, performing on our stage. It was a reunion fantastic in-size and in-depth. And, all those who decided to miss it or left early to go watch the Spurs game on TV, really felt like they’d missed something special. They just didn’t know where to find it.

As crazy as the week was, I think about that day and it calms me. What’s the calm without the chaos, what’s the silence without the song, but thinking about it now, I can’t wait to open my eyes and see it all right there in front of me, next year.

Here are a few photos I would like to share

IMG_5847 untitled-4841 untitled-4842 untitled-5107 untitled-5171

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Anna’s Adventures at SXSW, Part 1

Hi Y’All from Austin, Texas!

Hello to my friends at MSAA from South-By-Southwest (SXSW)! SXSW, is a 10-day music, interactive and film conference jam-packed with movie premieres, awards, panels, tech conferences, “tweetups”, concerts, parties and more! This is my SIXTH year at SXSW and there’s sure a lot in-store for me and my photography team as we embark on yet another musical journey during a very volatile, chaotic, and increasingly popular festival!

This year my agenda includes participating in a party hosted at Willie Nelson’s ranch (Luck, Texas) called the Heartbreaker Banquet. This is the second year I am participating in the Heartbreaker Banquet, I was part of the first-ever Heartbreaker Banquet last year at SXSW. The idea for this party came from a friend of mine, who worked tirelessly to secure the sponsors and Willie Nelson’s ranch!  For those of you who do not know Luck, Texas is the original set for the Red Headed Stranger movie and currently serves as Willie Nelson’s world headquarters. Last year, I did portraits in the jailhouse on the ranch; this year I’ve rented a 1963 retro Airstream trailer where I will be taking band portraits of the performers at the Heartbreaker Banquet. I am happy to announce this year’s Heartbreaker Banquet  has doubled in size, going from eight bands playing on two stages to 16 bands and THREE stages!

I will also be putting up a music photography gallery of my work and the work of another wonderful photographer friend of mine, Courtney Chavanell. The public will be able to view and purchase all of our portraits in Willie’s General Store on the ranch.

I am looking forward to sharing photos and stories from the Heartbreaker Banquet, so stay tuned! (Or follow the story on Twitter or Instagram!)

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