Move On, MS was originally started as a way to combine my work in the music industry with a need to create a support system for people within that community dealing with things like multiple sclerosis (MS). I held my first event at a friends’ bar in New York City. The event was a benefit concert which featured a live auction . It was a night full of friendship with people there as much to support MS awareness as they were to support me. MSAA Ambassador Anna Webber, who has now become a close friend and confidant, was by my side all night. We had music and great prizes donated by Live Nation, Roadrunner Records, Sumerian Records, Dangerbird Records, Fat Wreck Chords, Merge Records, EMI and so many more friends. That was the key word; friends. People came together as a community for that night and it felt like we could do anything. It was my proudest moment and I hope it would have been my mom’s as well. I felt that the money we raised paled in comparison to the connections we formed and relationships we cemented.

I believe it’s normal for the first time you do something like Move On, MS to see it more as something about your own state of mind and the healing and grieving process than a mission to change the world. I wanted to keep my mom  alive in whatever way I could and if she wasn’t going to be with me anymore I wanted the world to remember who she was. After it was over I didn’t feel healed; I felt like my work had just begun.

Moving on, (no pun intended) my goal was to improve upon the flaws of the last benefit and do something on a larger scale. My friends over at The Audio Perv, a popular music blog and USvsTHEMinc  put together an unbelievable lineup for their official CMJ Music Marathon showcase at The Bowery Ballroom and invited me to come along for the ride. I am humbled by the faith they have placed in me and their support of my idea. On October 18^th we will come together for a night of music and Move On, MS starting at 7:00pm EST. Tickets are $10 at the door and we will  be giving away some exciting prizes all night including a guitar signed by My Chemical Romance and a photo taken of Beck and Philip Glass by Anna Webber herself that was signed by Glass.  Some of the items have been generously donated by BUILT NY, GelaSkins, Engineer Records, Live Nation and more. For more information on the event you can visit my Facebook page at www.facebook.com/moveonms.

My name is Katie Ellsweig and in March of 2011, my mom passed away as a result of Primary Progressive Multiple Sclerosis. I was 24 years old. It’s no secret that there are a vast number of individuals  living with multiple sclerosis (MS). But MS isn’t just about them; it’s about their families and friends who live with the disease as well. It’s about the people whose lives are changed by MS, whether from their own diagnosis or that of their parent, friend or loved one.  It’s not easy watching someone who should be protecting you lose their ability to walk, eat and eventually speak. MS is a monster of a disease; one that only now as I venture into my own fundraising efforts I am beginning to fully understand. I believe that it’s important within the MS community to tell not only my story, but hers as well.

Jean Elizabeth Ellsweig grew up in Hillsdale, New Jersey. When she married my dad they moved to Campbell Hall, New York where my sister and I were born.  She was a beautiful woman; about 5’2”, slim with fiery red hair and green eyes. She loved Paul Simon and T.S. Elliot. Around the time of my birth, she was diagnosed with Primary Progressive MS, which as most know, is the rarest type of MS to have. I don’t remember much of my mom before she was confined to a wheelchair.  For the last ten years of her life she was living in a center for handicapped and elderly people. My mom was only 54 years old when she died. She was on a feeding tube and she had to be rushed to the hospital every few weeks with infections. Her muscle deterioration was so extensive that it took great effort for her to speak.  Her MS had taken so much out of our relationship that for years of my life it was hard for me to want to be around her. There was anger and frustration on both of our parts that I will regret for the rest of my life. I did however, move forward and I believe she found peace and we discovered a love for each other that was unbreakable. She made me laugh. Her smile could melt my fears away and her strength is something I try to encompass every day that I am here without her.  Those days have been challenging, but have been made fuller by the people I’ve met who emit that same fortitude and conviction. Many of those people I met through  MSAA.

I missed days and moments of my mom’s life because of so many misunderstandings.  I think that’s why the MSAA is here; to give people a chance to understand and to know that they’re not alone. I felt very alone for a long time after my mom passed away. I spent days and nights wishing I could go back and I was angry; angrier than I had ever been in my life. It took a while but I convinced myself that there was a better way and a chance for me to be able to change the lives of other people affected by MS.

I started my charity project, Move On, MS: Keeping You Moving Against Multiple Sclerosis at first because I was looking for a way to heal. As time went on it became much bigger than myself. It’s about creating a community and a bond where maybe there isn’t one and using my love and life’s work in music to create that. In my next post, I will tell you about our next event and everything you can do to support this project.

My name is Rob and I entered the world of multiple sclerosis (MS) one year ago. At the time I barely knew what MS was. I was released from the hospital in early October 2011 with a diagnosis of probable MS, which was quickly confirmed. This was terrifying news for a 26 year-old recently engaged guy, whose only other hospital stay was for having tonsils removed. During the first  few weeks, I read all I could about MS and talked to any expert that would listen. During this time the range of emotions, I felt went from being encouraged  and positive to lowest I ever felt.

In November [2011] a co-worker helped to change my life when she signed me up for a half marathon in January [2012]. I had never run a marathon before and frankly the thought of doing one never crossed my mind before that moment. With the help of her constant encouragement and the positive support of my friends and family, I trained  and completed my first half marathon, post diagnosis. I didn’t break any land speed records, but on that day I won. I successfully went from not being able to walk across a room unassisted to running 13.1 miles in the span of 2 months which made me wonder what else I could do.

During training, I began to realize that exercise no matter how light was helping me with my MS, specifically spasticity and MS fatigue. When my arms would shake or when my legs began to feel like they were rooted into the ground I stopped and rested. When I was feeling good I pushed myself. The more I trained the less symptoms I had. Even knowing this I did nothing for a month after the race and I had my next exacerbation. This one I say, my left leg and arm recovered about 95%. I walk a little funny sometimes now and the grip of my left hand is noticeably weaker. I felt fortunate that my exacerbation didn’t do more damage. I took this as a sign that I needed to be better. I had kicked around the idea of making a group promoting an active lifestyle for MS patients after the marathon and this pretty much sealed the deal.

Please note: Before beginning an exercise program patients should always consult with a healthcare provider, preferably one who has knowledge of multiple sclerosis.

With help from family and friends, particularly my beautiful wife who has been my rock and dedicated partner through all this, Active With MS is now a reality. It’s my goal now to promote an active lifestyle for all MS patients and to help the MS community as much as I can. I want to inspire and motivate MS patients to stay active and never give up. I love MSAA because I find them to be amazing advocates for us. MSAA provides many services, but I like to highlight two in particular. First, MSAA’s cooling equipment program. This program provides equipment which can be critical to a MS patient trying to lead an active lifestyle. The second one is the MRI Institute which helps to pay for expensive MRIs.

I look forward to building this group up in the years to come and raising money for MSAA through active events like runs and swims – maybe we can even throw in a bowling night.

Thank you MSAA for letting me guest blog. As I say at the end of all my posts on activewithms.com: Stay active, stay positive, go forth and beat MS.

Staying connected while feeling isolated is often difficult. Many living with multiple sclerosis (MS) venture to a local support group or in-person education program to seek out those who are also living with MS, but due to a lack of time, geography and other limitations, these options are not always available.

Luckily, in this new digital age, there are other options that exist through social media. These wonderful tools can help to keep you connected to your local community, and the rest of the world at large.

The easiest and most widely used tool for most is Facebook (www.facebook.com). Everyone is on Facebook – children, parents, grandparents, everyone you went to school with, and beyond! The most relevant part of this tool is that a number of great MS resources have pages including MSAA, local support groups, and even MS treatment facilities.

Another option is Twitter (www.twitter.com). Twitter is known for being the go-to social media outlet for celebrities, politicians, and others in the media. The idea behind Twitter is to push out information in very small bites (140 characters max). Try searching #multiplesclerosis using Twitter’s search function and you will be amazed at the conversations you’ll be able to strike up.

Are you looking for a venue to share your viewpoints or creativity with the world? Or simply seeking a sounding board? Consider Tumblr at www.tumblr.com or WordPress at www.wordpress.com. Both sites allow its users to create and customize blogs to share their feelings and thoughts on a variety of topics that can then in turn be shared with friends via email, or other social media tools like those above.

While these are just a few of a multitude of the new social media tools available, they are four widely used options allowing you to stay connected to the world without ever leaving your home.

You can connect with MSAA on Facebook: www.facebook.com/msassociation and Twitter: www.twitter.com/msassociation

Please also check out MSAA’s YouTube channel http://www.youtube.com/msaalink and Pinterest page http://pinterest.com/msassociation/link.

Thank you to everyone who participated in this summer’s Swim for MS Pool Party – swimmers, supporters, family, and friends! The generous help and dedication of all involved helped to raise funds to support individuals with multiple sclerosis through the many vital programs and services offered by MSAA.

The Swim for MS Pool Party, part of MSAA’s popular Swim for MS program, took place from Memorial Day to Labor Day 2012. Pool Party volunteers hosted one-day events in their own backyard or community pool – such as swimming laps, doing cannonballs or a game of Marco Polo – and collected pledges from friends and family. A few highlights from this summer’s Pool Party:

Marcus B. from Texas completed 500 jumps in his local pool and raised $100 with his Pool Party.

Jeannie L. in Florida raised over $1,200 by organizing a Synchronized Swim for MS Pool Party for her 50th birthday!

Cody J. of Pennsylvania held a 24 Hour Swim Party and collected over $1,600 to help those with multiple sclerosis.

Coming Soon! Though the summer Pool Party may be coming to an end, be on the lookout for the new and improved year-round Swim for MS, featuring an updated design and easier ways to create, improve, and utilize your Swim pages. Check back regularly at mymsaa.org for more in the coming weeks, or sign up to be the first to know about MSAA’s brand new Swim for MS here!

On Tuesday, September 18 Cherry Hill, NJ Mayor Chuck Cahn was on hand for the official unveiling of a solar panel array that was installed at the Multiple Sclerosis Association of  America’s national headquarters located at 706 Haddonfield Road in Cherry Hill, NJ.

MSAA partnered with Independent Solar of Clinton, NJ to install a 109 kW rooftop solar photovoltaic (PV) system consisting of 444 solar panels that will offset roughly 70% of the electricity used at MSAA’s national headquarters.

The system was installed via a Power Purchase Agreement (PPA) between Independent Solar and MSAA. The PPA is expected to save MSAA more than $146,000 over the next 20 years with zero out of pocket expense.