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: https://www.mymsaa.org/news-msaa/871-aan-highlights-2013
Mother’s Day is almost here!
All that I am, or hope to be, I owe to my angel mother. – Abraham Lincoln
Mother’s Day is a wonderful opportunity to honor the special mothers in your life. They could be your own mom, a sister, grandmother, daughter, friend, or co-worker. While these caring individuals deserve to be recognized every day, we can pause and give thanks on this very special day. Honor these special women with a donation to the Multiple Sclerosis Association of America (MSAA). Your donation will enable us to fulfill our mission of improving lives today for the entire MS community. With each donation, you will have the option to send a personalized online card to the person being honored, letting her know of your support of MSAA.
Your gift supports vital services and support such as our toll-free Helpline, equipment distribution, MRI assistance, and more.
“Thank you so much for making such an impact on my summer. I have 4 kids and I have been able to do a lot with them this season because of the cooling vest. Even take them swimming in the humidity. I appreciate your kindness.”
– I. P., North Carolina
Please make your special Mother’s Day donation today! Improve lives today by honoring the special women in your life.
Happy Mother’s Day!
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.
May 2013 Artist of the Month:
Alexandr Rapoport – Palo Alto, CA
About the Artist
Alexandr was born in Moscow, Russia in 1972. He loved art from a very young age and took years of private lessons to prepare him for Stroganov University of Art, where he graduated in 1996. Since then, he has worked as an artist and a designer. His works were displayed at several exhibits in Moscow, and later in America. Alexandr was diagnosed with multiple sclerosis in 1999, but the disease didn’t decrease his interest in art, and he continues to draw as much as he can.
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.
Please share with your friends and family today! Support MSAA today with the Modify “Together” watch!
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.
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:
*If you will be distributing flyers or posters, please submit this form. MSAA will contact you within 24 hours.
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.
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!
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.
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!
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
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…
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
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:
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!
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!)