Comprehensive MS Research Update Now Available from MSAA

MS Research Update

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

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Greetings from the Midwest!

I’ve hosted many educational programs over the years, where I have had the opportunity to meet many wonderful people, who have enriched my life.

In these meetings, a common theme has emerged – Attitude. Presenters often speak to the importance of a positive attitude. It can have a profound impact on how we feel and handle the challenges we face each day.

One thing I hear often in the field is how frequently our clients take on a variety of challenges with a positive outlook.

One person who stands out is Dan, an MSAA client, that I met at a program. He shared his own story of overcoming obstacles with gusto and motivation. There are many individuals like Dan who come to our programs and share their struggles, as well as, their triumphs. These interactions are what make my work in the field so inspiring.

What a week in the Midwest! There were several programs held June 17-22 where clients had the pleasure to listen to prominent MS medical professionals in Michigan, Ohio, and Wisconsin. Each presented his approach for managing MS symptoms and improving quality of life. MS clients, family, friends, and caregivers were inspired. All attending learned much about the importance of nutrition, exercise, and appropriate medications. Many practical tips were discussed.

At one event in Wisconsin, I had the pleasure to meet Cheryl Vanderloop, MSAA’s Artist of the Month for June. She attended a program and introduced herself to me. She is very inspiring. At the end of the program, I surprised her by opening up our website via a wi-fi connection, where I displayed her work and introduced her to the many in attendance. She received a resounding round of applause. Her smile was infectious.

I urge all of you to attend our educational events. They’re fair, balanced, and lots of fun. Please check out MSAA’s Calendar of Events for a program near you. Also, if you have an idea for program topics please leave a comment below!
I look forward to seeing you during my travels throughout the great Midwest!
Smile!
Scott

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Happy First Day of Summer!

While for many the “unofficial” start of summer is Memorial Day weekend, today is the summer solstice, which is the astrological start of the summer season. Typically this is the longest day of the year. This doesn’t mean our day has more than 24 hours in it – we just have more sunlight than any other day.

So what better way to enjoy all that sunlight than to jump into the pool for Swim for MS?!AWP_2012-MissyFranklin-7816

For those of you who do not know, Swim for MS is MSAA’s signature volunteer initiative which allows individuals to create their own swimming fundraising event while recruiting online donations to support MSAA’s mission of improving lives today.

How can you Swim for MS?IMG_5562

  • Host a summer pool party on the weekend!
  • Set a goal to swim 500 laps throughout the summer to raise $1,000!
  • Create a pool volleyball tournament with your friends!
  • Host a July 4th Pool Party
  • Participate in Swim for MS and pledge to swim 100 laps and improve your fitness by the end of summer!

For more information on how you can Swim for MS, please visit swimforms.org!

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Highlights from the CMSC and ACTRIMS Cooperative Meeting (2013)

MSAA’s article summarizing highlights from this year’s Fifth Cooperative Meeting of The Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) is now available. National and international MS experts attended this exciting conference, where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include:

  • new and experimental treatments for MS
  • pregnancy information for women with MS taking disease-modifying therapies
  • emotional and physical findings in MS
  • and much more!

Please be sure to take a look at this article that covers many important topics presented at this unique meeting.

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Father’s Day is almost here!

“My father gave me the greatest gift anyone could give another person, he believed in me.”
- Jim Valvano

Happy Father's Day from MSAAFather’s Day is an opportunity to honor the special fathers in your life. You can choose to honor your own dad, a brother, uncle, son, friend or co-worker. While those who believe in us deserve to be recognized every day, on this very special day, we can pause and give thanks.  

Honor these special men with a donation to the Multiple Sclerosis Association of America (MSAA). Your donation will help us to fulfill our mission of improving lives today for the entire MS community. With each gift, you will have the option to send a personalized online card to the person being honored, letting him know of your support of MSAA.  

Your gift enables MSAA to provide vital services and support such as our toll-free Helpline, equipment distribution, MRI assistance, and more.  

“I am brimming with gratitude and appreciation for the generous support of the MSAA for the MRI scan which I received. The scan produced positive results informing my neurologist and me that my condition was stable. This fellow cannot say enough good things about MSAA!”   - GLW, Georgia

Please make your special Father’s Day donation today! Improve lives today by honoring the special men in your life.

Happy Father’s Day!

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Spots Still Open for MSAA’s Children’s Program in Denver, CO

There are several open registrations remaining for MSAA’s upcoming patient education program at Dave & Buster’s in Denver, CO on Saturday, June 15th at 9 am. The free program titled, Bridging the Communication Gap between Parents with MS and Their Children, invites parents and children to come together for special workshops which teach parents how to talk to their children about MS and enable children to learn about living with MS in a supportive manner through fun, interactive games and activities. The morning begins with a full breakfast buffet and ends with each child registered receiving a free $10 Power Card for video and arcade games following the program. Registration is required by June 13, 2013. To register, please call the RSVP at (800) 532-7667, extension 155 or RSVP online at support.mymsaa.org/dbdenverco.

The Denver event marks the third children’s program in a series of six this year which are scheduled across the United States. The presenters include Dr. David Rintell from Harvard Medical School and Sue Rehmus, MSAA board member and founder of her own nonprofit, Children’s Hope for Understanding Multiple Sclerosis (CHUMS). After a summer break, the remaining children’s programs will begin in the fall and are scheduled for September 21st in Boston, MA; October 19th in Baltimore, MD; and November 9th in Orlando, FL. The response to these programs has been tremendous and we would love to get your feedback if you have attended pervious programs or want MSAA to bring a children’s program to your area. Please let us know by responding to this post, emailing us at msquestions@mymsaa.org or calling (800) 532-7667, extension 154.

 

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Consortium of MS Centers Annual Meeting – Part 2

Today has been an action packed day here at CMSC with scheduled presentation offerings from a wide array of specialists. This morning, I attended an interactive session designed for social workers or nurse case managers in discussing the multidisciplinary approach to many different types of client interactions for approaching difficult situations in practice and MS clinics.

This afternoon I was able to attend a program called “Progressive MS” put on by Dr. Patricia Coyle. Dr. Coyle, provided an overview of the history of progressive forms of MS, their etiology, the diagnostic process and considering potential differential diagnoses, and possible future therapies which are entering clinical trials including studies on:  Hydroxyurea, Amiloride, Lipoic Acid, BAF312, Masitinib, and Fingolimod. You can read about some of these studies in our 2013 Research Update.

Additionally, Dr. Coyle emphasized that in her patients she encourages making sure that Vitamin D and Vitamin B12 levels are normalized, that general health issues including diet and exercise are appropriately managed, trying to have good sleep hygiene, as well as a care plan to best manage symptoms. All of these factors together contribute to a plan for management of Progressive forms of MS.

These two sessions were only a few held this day, with other programs ranging from discussions of “MS Mimickers” and “Long Term Outcomes in MS.” In addition, there was an open poster session which provided an interaction and discussion opportunities about emerging research and abstract papers.

This Consortium is a great opportunity for all individuals involved in the care of MS patients to collaborate and discuss ways to best improve the comprehensive care plan and multi-disciplinary approach to MS management.

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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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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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