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.

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!

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!

 

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!

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: http://www.mymsaa.org/news-msaa/871-aan-highlights-2013

 

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!

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!

Four Legged Friends

I think that one of the most enriching and enjoyable experiences in life is to own a pet. Pets provide us with a feeling that is really hard to describe; it’s a feeling of companionship, support, and love all bundled up into one being. The feeling of love is one which is an unconditional love that no matter how bad of a day you are having, they are there to support you and love you. Pets provide comfort, a shoulder to cry on, or a “person” to talk to who can just listen.

For me, one of the best benefits of having a pet is- no talking back! No snide comments or judgments about why you are or are not doing something. I am sure there are people that think I am crazy because I talk to my dog like she is human. There’s just something cathartic about it, knowing that I can share anything and not be judged..

“A dog is the only thing on earth that loves you more than he loves himself” –Martin Buber

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When you have another life that looks up to you and relies on you for their well-being, it promotes a sense of self-worth. You want to be your best to provide for your pet. It is said that petting a dog releases beneficial hormones into the bloodstream known to be associated with healing and feelings of well-being. Not only that, but they make you laugh. And laughing is known to protect your body from stress. I laugh every day at dinner when my three year old dog gulp’s down her food like someone is trying to steal it from her, then proceeds to let out a HUGE belch when she is finished! The power of laughter is contagious and lightens your burdens and inspires hopes.

There is a pet out there for everyone. If you are having issues with mobility, or fear not having the energy to “play” with your pet, consider a cat, or a bird; both of which are fairly self-sufficient animals and can get by on their own during the time when you don’t have the energy. Maybe pet ownership isn’t for you at all, sometimes the financial burden and responsibility is too much.

That doesn’t mean you still can’t be affected by the power of a pet. There are several options for individuals to interact with animals through either therapy animal or service animal A therapy animal is trained to provide affection and comfort to people in need. They, along with their handlers, come to your home or facility for visits. Therapy animals differ from service animals in that they are not trained to perform a task for the benefit of an individual. A Service Animal is defined by the Americans with Disabilities Act as any dog individually trained to do work or perform tasks for the benefit of an individual with a disability. This can include guide, mobility, sound alert, and medical alert/response work. Service Animals can provide the same level of support and comfort that a therapy animal can, however, they take their jobs very seriously!

gypsy2

If you are interested in finding out more about therapy animals or service animals, there are several organizations and programs available to assist with your search. Pet Partners is one organization that helps people live healthier and happier lives by incorporating therapy, service and companion animals into their lives. Their website http://www.petpartners.org/ provides information and resources for individuals interested in therapy or service animals.
How have you been affected by a pet? Have you ever considered a service animal?

MSAA’s Senior Director of Patient and Healthcare Relations Featured on K-LOVE Radio

Cindy Richman, MSAA’s Senior Director of Patient and Healthcare Relations, was recently featured on K-LOVE Radio as a part of the Closer Look segment that the station produces. If you missed Cindy’s interview you can hear it here:

https://soundcloud.com/emf-public-affairs-audio/closer-look-klove-wkvp-3-10-13

 

MSAA’s Artist of the Month for April 2013

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the submissions.

April 2013 Artist of the Month:  Susan C. Russo – Pearland, TX

 

artist april 2013

 

 


 

 

 

“I have been interested in art since I was a child. I love the creative process. I just close my eyes and let my thoughts come to life. I feel that my work is an expression of God’s love and His gift to me. It would be a great injustice not to share the talent He has given me.

Additionally, art is a beautiful expression of not letting my MS gets the best of me. On days when I don’t feel all that well, I just pick up a brush or pastel and express my feelings in my paintings and drawings…”
Read more from Susan…

Be inspired – please send an online card featuring artwork by MS artist Susan C. Russo and spread awareness of MS and MSAA.