Swim for MS Updates – April 2013

Posted on April 17, 2013 by MSAA

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

Posted on April 15, 2013 by Samantha Schech

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

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?

Medications…How do I know what to pick?

Posted on April 12, 2013 by MSAA

With the recent approval of Tecfidera, individuals with relapsing forms of MS now have 10 different disease modifying therapy (DMT) options to discuss with their physicians. Having choices and options for treatment is a good thing; however, having choices brings challenges as well.

Now there are not just a few factors to consider when working with your physician to determine the most appropriate treatment choice. Instead of a few options you will be asked to consider a number of different factors in relation to each medication (creating the potential for major headaches).

Some of the most obvious choices are in relation to mode of administration (injection, IV infusion, or oral), while other considerations include efficacy, safety profiles, and risks associated with each medication. Combining all these factors and more can seem like a daunting task.

As a result, MSAA designed S.E.A.R.C.H.™ as a tool to help you navigate the complex process of selecting an MS DMT medication. The framework allows you to organize information about these medications and gets you thinking about which questions and concerns are most important for you when selecting a medication. Having a clear picture of questions to ask can also help facilitate and improve discussions with your treating physician around medication options.

So, if you are considering a new or different medication, let MSAA help you S.E.A.R.C.H. for the right therapy for you! You can find the S.E.A.R.C.H. information on MSAA’s website, www.mymsaa.org, or call (800) 532-7667 and ask to speak to a Client Consultant.

MSAA’s Artist of the Month for April 2013

Posted on April 10, 2013 by MSAA

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

“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.

MSAA Partners with Modify Watches for MS Awareness

Posted on April 8, 2013 by MSAA

MSAA is excited to be teaming up with Modify watches as their Together Partner for the month of April.

Modify will be donating $20 to MSAA for EVERY Together Watch sold during April (even for members of our 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.

Support MSAA today with the Modify Together watch!

Let’s Go Outside…

Posted on April 5, 2013 by Angel Blair

So we’re coming up on that time of year again, where winter will be a memory and the times give way to the arrival of spring! Though some areas across the country are still experiencing the last remnants of winter, spring is upon us and we can start going outside again without the harsh and bitter cold, and perhaps before the hot and humid summer feel…

How do you like to take advantage of the nice weather? Perhaps you have a certain activity you like to do outdoors when the weather permits? Well, if you’re looking for something to do outside, here are some ideas to celebrate the end of winter!

*Please remember to consult with your physician before taking on any new exercise or physical routine*

Take a walk- If able, taking a stroll around the neighborhood with a friend or relative can be an enjoyable and relaxing time to chat and get some exercise
Like to garden? The winter months were definitely not kind to plant life, so planting some fresh flowers and vegetables can add rejuvenation to the ground after the harsh cold
Attend a sports game- do you have a friend or relative who plays in a little league, or someone who plays in a sports league for fun? Going to a game can be relaxing and entertaining and a way to enjoy the sunshine!
Like to read? Sitting outside with a good book or magazine can provide a chance to enjoy the change in weather

So what are some of your favorite outdoor activities?

Let Me Introduce Myself

Posted on April 1, 2013 by Samantha Schech

Hello MS bloggers!! My name is Samantha. I am the newest member of the Client Services team here at the MSAA. I am more than excited to begin this journey exploring the complex world of multiple sclerosis (MS). I am eager to learn from you and hear your individual stories.

I would like to share a quote with you all. In my office hangs a scroll printed with my daily mantra, my “words to live by” my inspiration to do good things in this world. The quote is from the Dalai Lama, titled A Precious Human Life.

“Every day, think as you wake up:

Today I am fortunate to have woken up.
I am alive, I have a precious human life.
I am not going to waste it.

I am going to use
all my energies to develop myself,
to expand my heart out to others,
to achieve enlightenment for
the benefit of all beings.

I am going to have
kind thoughts towards others.
I am not going to get angry,
or think badly about others.

I am going to benefit others
as much as I can.”

These words provide comfort to me. The quote helps to move me forward during a difficult day, or slow me down to help appreciate life. Whenever I encounter a new struggle, I look to this quote to provide support and security.

Thank you in advance for sharing your stories throughout this blog. I look forward to hearing more from you!

New MS Drug Approved

Posted on March 28, 2013 by MSAA

Tecfidera Approved for the Long-Term Treatment of MS

The United States Food and Drug Administration (FDA) announced that it has approved Tecfidera™ (dimethyl fumarate or DMF, formerly known as BG-12) for the treatment of relapsing forms of multiple sclerosis (MS). This is the 10th drug to be approved as a disease-modifying therapy (DMT) for the long-term treatment of multiple sclerosis (MS). Tecfidera is administered orally (by mouth) and is the third oral DMT approved for MS.

As with all of the approved DMTs for MS, Tecfidera is not a cure, but does slow MS disease activity. It reduces the number and severity of MS relapses (or symptom flare-ups) while reducing disease activity as seen on magnetic resonance imaging (MRI) scans — by reducing the number and size of brain lesions (areas of inflammation). Additionally, Tecfidera slowed the progression of sustained disability (in one of two large Phase III trials).

Please see MSAA’s online news article for more information!

Anna’s Adventures at SXSW, Part 2

Posted on March 27, 2013 by Anna Webber

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

Community Matters

Posted on March 25, 2013 by Amanda Montague

Greetings from MSAA’s Western Regional Office! As the Western Regional Director, I have a large territory to cover: California, Arizona, Utah, Nevada, Oregon, Washington, Alaska and Hawaii! I’m often on the road for education programs, and last week was no exception. We had a wonderful program for neurologists in Woodland Hills, CA with Dr. Andrew Woo on Tuesday, March 12 and another program in Portland, OR with Dr. Liz Crabtree on Thursday, March 14. On Saturday, I went to Las Vegas for a patient education program with Dr. Lilyana Amezcua on “The Changing Landscape of Multiple Sclerosis: The Latest Research and Updates to Help You Live Your Best with MS”. As always, it was wonderful to spend some time with the dynamic group of MS clients and care partners in Las Vegas.

It’s always amazing to me to come across active groups of MS clients in my travels. Las Vegas is definitely one of those places! They have such a strong community of MS clients and care partners there, in no small part due to the work of Darlene Trotsky. Darlene started a MS Lunch Club seven years ago, and the group is still going strong today! I remember the first time I had a patient education program in Las Vegas years ago and getting a call from Darlene. Darlene told me about her group, and offered to help get the word out about the program. Her energy and commitment to the MS community in Las Vegas was obvious from the start, and this impression was only made stronger once I entered the room for the program. The level of care and compassion they felt for each other was only matched by their genuine interest in learning as much as they could about MS and better understanding how they could meet the challenges of MS collectively. There was a recent article in the Las Vegas Review Journal about the wonderful work that Darlene and all involved in her group are doing http://www.reviewjournal.com/life/community-organizations/ms-lunch-club-social-event-purpose.

The Las Vegas MS client community is a wonderful example of what I see throughout my region as I travel. From the MS Encouragement Group in Phoenix, Arizona to the Alaska MS Center in Anchorage, I am always touched to see MS clients and care partners creating a real sense of community in their areas, and I think that the power of communities is something that shouldn’t be underestimated. In that spirit, here are some of my favorite quotes about the importance of communities:

“A healthy social life is found only, when in the mirror of each soul the whole community finds its reflection, and when in the whole community the virtue of each one is living.” –Rudolf Steiner
“Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” –Margaret Mead

I’ll end on a personal note. I feel honored to work for an organization that understands the importance of community and lucky to experience that sense on a local level at all of the education programs I attend. Anita Roddick, founder of The Body Shop, has a quote that expresses this just perfectly for me.

“I want to work for a company that contributes to and is part of the community. I want something not just to invest in, I want something to believe in.” I couldn’t have said it better myself!

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