New MS Drug Approved

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!

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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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Community Matters

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

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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MSAA’s MS Research Update

MSAA's Research Update 2013MSAA’s MS Research Update is a comprehensive overview of research findings on the FDA-approved disease-modifying therapies, as well as many experimental treatments.

This 2013 edition of MSAA’s MS Research Update is the first to be printed as a stand-alone issue, reflecting the diversity and scope of research progress in MS. This information is based on a wide range of sources, including the extensive journal literature on MS and its management, a review of ongoing clinical trials, and papers presented at major national and international conferences.

Read MSAA’s latest MS Research Update.

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Women of Today

As we celebrate the month of March as Women’s History Month, it’s hard not to think of the differences between the women of yesterday and today. Not to say that ideals or values weren’t the same, or that one group is more superior to the other, but of the advancement and overall change that has occurred in the world around us that differs so drastically from the past. As a woman of the past, can you imagine not being able to vote for the President? Or not wearing pants because it was assumed that all women should only wear dresses and skirts? It’s hard to believe how far we’ve come in society in comparison to a whole other world of the past where women were seen in such a different light.

I think as society continues to shift and progress from years past, women will continue to have even stronger voices and values within all aspects of life. Could you imagine going from not being able to vote for President, to having the opportunity to potentially become the President? Astonishing…

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Katie’s Story

When you lose something you love, the idea of time always becomes your excuse. It’s always I’m not ready yet or I’ll get to that another day or I’ll see you some other time. Family members become people you only see at weddings and funerals and lunch with the girl friends pushed back month after month. Forget about that gym membership, it’s a faded memory. You start to convince yourself that if you can just buy yourself more time, somehow what you’re feeling will get better on its own. I think my mom felt much the same way when she found out she had multiple sclerosis (MS). If only she could deal with it another day, maybe it wouldn’t be so bad. I’m not sure when the day was that she finally decided to face her illness. Maybe it was the day she was fitted for her cane, or her crutches or finally her wheelchair. Maybe it never happened at all. For me it happened two years ago today, the day she passed away.

My mom, Jean, was a florist before MS. Her love of flowers is one of the many attributes I adopted from her. We had a massive lilac tree in the back yard and a line of forsythia bushes in the front that seemed to make a bright yellow barricade from the street. There were rose bushes outside the back door and peonies outside the front. In the spring, the catalpa trees would blossom and cover the ground in these tiny white flowers, as if it were snowing. We had a cat that used to eat the supposedly poisonous poinsettia plants in the winter; she lived 18 years. Flowers have become one of the many ways I remember my mom. Twice a year, I have another one tattooed on my arm. While I realize that at some point I will run out of space and/or drive my father insane, I think the finality of knowing that these flowers will always be with me is something special. They defy time.

Reflecting on the past two years, and how I’ve come to work with the MSAA and be involved in the fight against multiple sclerosis is not an easy task. Then again, believing in a cause is not easy either. The biggest part of this entire journey has been the support from my friends and complete strangers. It has been the people I met whose lives inspired me to be better. It was Anna, the woman my age traveling the country snapping photographs of people in the most beautiful way while she monitors her symptoms using the My MS Manager app for her iPhone. It was Joe, who reached out to me through a friend to tell me about his own mom and her unbelievable struggle. It was Amanda and Neal, who continue to support me with their confidence and their dedication to the MSAA where they work. It was Shawn, who hiked 814 miles to tell the world that she wasn’t going to let her MS bring her down. These people deserve a standing ovation in my heart. I applaud them and I thank them for being a part of my life.

I’m not even close to done yet. I’m starting the planning for another Move On, MS event as I write these words. That will happen and it will be great. I do think it’s important to take time and reflect, to be sad when you need to be, or to take a break. It’s hard to describe the impact that losing my mom to MS has made on my life over the past two years. It made me broken. It made me sad, angry and alone. Then it made me strong. It made me open up, talk to people, make new friends, be unafraid. It made me stop putting things off, make plans to see family, take the afternoon off to have bloody mary’s with my friends. It made me dedicated, wiser and calmer. It has given me a purpose. It has made me a proud Ambassador to the Multiple Sclerosis Association of America. A place in which I think I would like to stay.

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March’s MS Artist of the Month

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

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 new submissions.

March Artist of the Month:
Susan Bloom – Plainwell, MI

painting by Susan Bloom - Lion of the Tribe of Judah“In 1996, I was completing my bachelor’s degree and in a high stress job when I received a diagnosis of multiple sclerosis. At the time, I felt a great despair thinking life as I knew it was over. After coming to terms with my MS, which included going on disability from my job and discontinuing school, I knew I needed a change in my life…”
Read more about Susan Bloom’s story with MS and art

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

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MSAA’s Senior Director of Patient and Healthcare Relations Featured on SecureACure4MS

On Monday, March 11, 2013, MSAA’s Senior Director of Patient and Healthcare Relations Cindy Richman was interviewed by SecureACure4MS. During the interview, Cindy discusses MSAA’s programs and services, as well as the ways you can support MSAA.

You can hear Cindy’s interview by visiting this link.

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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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A ‘Thank You’ to the woman who inspired me

My grandmother frequently told me this story about my mom. When my mom was born she was born “in the surron” (enveloped in a protective film).  Among the country people of Puerto Rico this was a very auspicious occasion because it meant that the child would grow up to be highly intelligent.  Many years later this same endearing grandmother would tell me that our Labrador retriever, Kada, was highly intelligent because he was born with a protrusion emanating from the top of his head. How this one came about, I’m not quite sure.

I wasn’t born in the surron, or with a lump on my skull. As a matter of fact, the only bumps I could remember were the cocotazos (lumps) I used to get, from the nuns in Puerto Rico, when that glassy look would change my countenance as my daydreams infiltrated their lessons. Or, when my brother, Brandon, inspired by Saturday Night Live, would hold me in a head lock and impart some Pizza Man (Bill Murray ), nookies upon me.

Unlike my Mom, I was somewhat shy and awkward as a child and had to fight for any kind of scholastic success.  Even as an athlete, my mom was told that I had 2 left feet and would never be much of a runner. I always felt that I had to work harder, in everything, to reach any sort of proficiency.

Upon being diagnosed with MS I felt like that child being dealt yet another blow. A deluge of emotions overwhelmed me as I tried to understand the implications of the disease and how it would impact my life. How much more could I endure? I had lost my grandmother, gone through a bad divorce and survived a horrific car crash. Just when I thought my life was changing, I was engaged and within three weeks of getting married again, life had dealt me yet another blow.

Depression and sorrow was not what I had expected my new marriage to be full of.  The disease, in addition to medications that made me even more depressed, had paralyzed me into a lethargic, self-pitying coma. I became a dragon in my lair; a recluse who did not want to engage in any social activities that would remind me of the pre MS life that I yearned. The passion that I once held for art, reading, and running were ghost like remnants.

After long months of bereavement I finally understood that I could NOT let MS ruin my life. So with my final acceptance I placed a caveat: I would not let MS beat me.

I meditated, started running and writing again.  I continued my book about my experiences with MS called “Rising with Dignity” (copyrighted).  I also decided, with my husband, to hike 817 miles across the state of Arizona to raise awareness of MS. Yet, more importantly I wanted to help others find the strength and courage, inherently possessed, to overcome our fight against MS.

I was starting to become whole again, confident and courageous in my fight against MS . I still had MS but I would stay grounded and not let its talons swoop me away.  I would become that scrappy child again, fighting for what I believed was just – my right to a meaningful life.

And so even though my grandmother gave birth to a child in the surron it was she [my grandmother] who bequeathed each one of us with intelligence, courage and love.  I thank her for the woman I have become.

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