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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Celebrating Memorial Day

The Memorial Day holiday is known by many as the official start of the summer season. Some individuals decide to celebrate the day with a BBQ while others take a trip to the beach to kick off the start of summer. Amidst the fun and celebrations on this day, it is important to reflect and remember what the day represents. It is a time to honor and remember those who have served in the US military; those who fought for our country and dedicated their lives to keeping us safe. We are able to celebrate and enjoy time spent with others due to their courage and valor. So this Memorial Day, during the fireworks and cookouts, think of what you’re celebrating, as it is a day that surely deserves remembrance.

 

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Watch Our New Video on MS Relapses

A Closer Look at The Importance of Treating and Managing MS Relapses
featuring Stephen Krieger, MD

Managing the unpredictability of multiple sclerosis is always challenging, especially for individuals with relapsing forms of the disease. When new symptoms appear or existing symptoms become worse, successful management involves accurately defining the relapse and understanding the best method of treatment.

Recognizing the need for additional awareness on this topic, MSAA is proud to announce the completion of its latest educational on-demand video, titled: A Closer Look at The Importance of Treating and Managing MS Relapses.

Watch the latest on-demand MSi video, A Closer Look at The Importance of Treating and Managing MS Relapses, complete with chapter stops on mymsaa.org

Supported by an educational grant from Questcor Pharmaceuticals, this 40-minute video features neurologist and MS expert Dr. Stephen Krieger of Mt. Sinai Hospital in New York City. In this relaxed, conversational-style interview, Dr. Krieger provides:

  • valuable insights into understanding the signs and symptoms of an MS relapse
  • guidance on when to discuss the onset of a flare up with a neurologist
  • a thorough explanation of the various treatment options including steroids and other medications

The video is now available on the Multiple Sclerosis Information (MSi) section of MSAA’s website and also features a downloadable PDF transcript of the program.

To view this new program, A Closer Look at The Importance of Treating and Managing MS Relapses – with chapter stops during the video – please visit support.mymsaa.org/relapsevideo.

To view all of the informative on-demand videos and archived webinars from the MSi library, please visit mymsaa.org/videos.

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Register for a Free Webinar Presented by TEVA Pharamaceuticals about The Affordable Care Act

TEVA Pharmaceuticals is sponsoring a free webinar tomorrow, May 21st at 1:00 PM EST entitled “The Affordable Care Act’s Health Insurance Marketplaces: Overview for the MS Coalition.”

MSAA is an active participant in the MS Coalition and encourages anyone who is looking for general information on the Affordable Care Act to participate. The program will provide an overview of the new and emerging health insurance Marketplaces as well as MS specific information.

Please note that registration is REQUIRED. Be sure to click the following link: (https://tevausa.webex.com/tevausa/onstage/g.php?t=a&d=794060172 ) to insure your spot in the program.

 

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Dear Diary….

The grown up version of a teenage diary, journaling is a great way to connect your thoughts and tune in to how you are feeling on a daily basis. Although difficult at first, eventually you will find yourself writing page among page effortlessly. Journaling allows us to express our deepest fears, saddest sorrows, and greatest accomplishments in an open non-judgmental format.

Writing quickly frees your brain from “shoulds” and other blocks to successful journaling. If it helps, pick a theme for the day, week or month (for example, love, confusion, change or anger). The most important rule of all is that there are no rules!

All you need is a pen and paper, nothing too fancy to start! Online journaling resources such as Penzu and Penmia can be used for those who may feel more comfortable typing rather than writing. Also in this format, assistive devices can be utilized in order to journal more freely and openly without the struggle of pen and paper. Even a voice recorder or video recorder could assist with journaling!

By journaling routinely you will get to know what makes you feel happy and confident. You will also become clear about the situations and the people in your life. Journaling about stressful events helps you come to terms with them, thus reducing the impact of these stressors on your physical health. Journaling about anger, sadness and other painful emotions helps to release these feelings. By doing so, you will feel calmer and better able to stay in the present.

Tune into yourself. Journaling can benefit individuals with MS, by connecting the mind and body. Journaling about a symptom creates awareness around the symptom; when did it start, what you were doing when it started, and did anything make it better or worse. Symptom tracking through journaling is an effective way to help manage your MS.

Through your expressions you’ll discover that your journal is an all-accepting, nonjudgmental friend. And may provide the cheapest therapy you will ever get. Best of luck on your journaling journey!

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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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Hello from the Northeast Region!

Hi all! As the Northeast Regional Director, I plan all of MSAA’s educational programming from Maine to Washington DC. My territory may not look very big on the map, but don’t be fooled! I cover Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut, New York, Pennsylvania, New Jersey, Delaware, Maryland and Washington, DC. I spend a lot of time traveling throughout the Northeast hosting educational programs for patients, and the last month has been very busy  here.

This week, I wrapped up a four-program series called “MS Update 2013: What’s New in the Treatment of Multiple Sclerosis?” that focused on the latest treatment options in the management of MS. There were three programs in April—one  in Freehold, NJ with Dr. Amos Katz, one in Plymouth Meeting, PA with Dr. Thomas Leist, and one in Cherry Hill, NJ with Dr. Donald Barone—and  the last program was held on May 8th in Staten Island, NY with Dr. Allan Perel. Each program had a lengthy question and answer session at the end, and everyone who attended was encouraged to ask the presenting doctor any questions they had about the currently-approved FDA therapies, research, and general questions about MS. It seemed like everyone learned a lot at these programs, and I was impressed by their thoughtful questions!

In the last month, my travels also took to me Syracuse, NY and Amherst, NY for patient programs on “Managing MS Relapses” with Dr. Lev Goldiner and Dr. Peter Kinkel, respectively. I also made it down to McLean, VA in the DC Metropolitan area, for a patient program on “Managing Your MS” with Dr. James Simsarian and his nurse practitioner, Alona Williamson.

I am so fortunate to be able to attend these programs and meet so many wonderful people that make me so grateful to be able to do the work that I do. At a smaller, more intimate program last month, I had the opportunity to speak with a young man who diagnosed with MS a few weeks before the program, and just days before his wife gave birth to their new baby. I was so inspired by his positive outlook about his diagnosis and wanting to learn as much as possible about MS, so he could self-advocate to ensure he would receive the best care possible.

As many of you know, MSAA hosts hundreds of educational events for both patients and healthcare providers each year. If you live in the Northeast and are interested in attending a program, two are coming up: The Changing Landscape of MS: What Does It Mean for Patients? with Dr. Rock Heyman in Pittsburgh, PA on May 15th and Managing MS Relapses with Dr. Scott Newsome and Kathleen Costello in Baltimore, MD on June 6th. I am also in the process of planning patient programs in Erie, PA, Rochester, NY, Burlington, VT, Maine and New York City over the next few months, and am hoping to expand that list.

Add our Calendar of Events to your bookmarks and check in every so often to see if there is an event in your area! I hope to see you at an event soon!

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