About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Greetings from the Northeast Region!

By Lauren Hooper

Greetings from the Northeast Region! I hope everyone has been doing well and keeping cool in these warmer months. Now that we’re in the thick of summer, we take a bit of a hiatus with educational programming in the Northeast, but come early fall, we’ll be in full swing again. We have more than 25 patient programs in this region alone and dozens in each of the other regions as well that we’re starting to schedule for the last half of 2015, so please keep your eye on our calendar of events to see if there are any coming up in your area. Here are some topics that we at MSAA are going to be bringing to various cities nationwide this fall and winter:

  • “Hot Topics in MS,” which focuses on the latest research and news in MS
  • “Swim for MS” programs focusing around how swimming and aquatic exercise can benefit those with MS
  • “Women’s MS Educational Summit” programs which specifically are targeted for women
  • “MS Educational Day for the Patient & Care Partner,” which is a series that will target both those with MS and the people that care for them, with care partners sitting in on a separate session to discuss how to take the best possible care of someone with MS and themselves
  • “Open Forum” style programs, which are much more informal and interactive, where the presenter will lead more of a discussion and focus heavily on Q+A from the audience
  • Larger “MS Education Conference” programs for patients and their families with multiple presenters at each program who will talk about their respective fields of expertise in the MS world (i.e. neurologists, nurses, PTs, OTs, etc.)
  • “The Day to Day Treatment of MS,” which will include a discussion on adherence & relapse management
  • “Research Advances in MS,” which will bring the most up-to-date information about what’s new and what’s in the pipeline to attendees

These are just a smattering of our educational offerings and we are constantly adding new cities and topics to our list, so please feel free to reach out to us if you have any suggestions for topics you’d be interested in learning more about! If you happen to be a resident in one of the states I cover, I hope to see you at a program this fall! If not, I hope you’ll visit one of my fellow directors in your region at a program near you!

* Lauren Hooper is the Northeast Regional Director at MSAA.


Highlights from the 2015 Annual Meeting of the CMSC

NEWSMSAA has posted a new online article providing highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting held in Indianapolis, Indiana in May. MS experts from around the country attended this exciting conference where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include updates on MS disease-modifying therapies and findings from several cognitive and psychosocial studies. Various lifestyle factors such as diet, nutrition, and exercise are addressed in detail as well. The article also provides information on other topics of interest, such as diversity in multiple sclerosis, caregiver stress, gut microbiome, and more.

Read the full article on highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting.

If you missed MSAA’s article summarizing data presented at the American Academy of Neurology’s 2015 Annual Meeting in April, please check it out here.


Journaling as Therapy for Multiple Sclerosis

By: Meagan Freeman 

Unfortunately, things do not always work out the way we want them to. Marriages end, friendships change, and illness sometimes make our decisions for us. I often find myself worrying about the future, and thoughts invade my mind during stressful moments. Will I ever have the chance to swim on a beach in the Mediterranean? Will I see Europe the way I have always wanted? Will my children be embarrassed to be in public with me with my assistive devices? Boy, my thoughts can sure get dark at times, and anxiety can take hold and pull me out of reality very quickly if I allow it to.

Writing can be the most therapeutic experience.

No matter what challenge I am coping with, I find that if I sit down and pour those feelings onto paper, I am refreshed and renewed. It is much like traditional therapy with a counselor, except the paper is your therapist. The words are your medication, and the process of putting your thoughts and emotions into words is your cure.

I am a rather shy person, and some would say I am quiet and private. I have a few extremely close friends and family, but I keep my circle small. The interesting thing is, when I sit down to write I have no trouble communicating and expressing my feelings. Words are my favorite form of expression. Whereas spoken words leave your mouth and cannot return, written words can be erased, changed, and edited after you have reviewed them.

When coping with a chronic illness like MS, expression of feelings is incredibly important. It is so easy to feel alone and without friends who understand. Journaling and writing are great options for those who feel uncomfortable talking. “People who journal find a higher sense of self-awareness and are able to reduce anxiety and gain a sense of empowerment. Many people who struggle with deep emotional conflicts or traumas are unable to express their feelings in a verbal or physical way. Journaling allows a person the freedom of expression without fear of retaliation, frustration, or humiliation.” (http://www.goodtherapy.org/journal-therapy.html#)

My journaling experience has evolved into my blog, and eventually became my recently published book. My hope is that my writing will continue to help me express the feelings I have about each challenge with MS, parenting, and life in general. In addition, I may have the opportunity to continue to heal others through this writing.

In my practice as Family Nurse Practitioner, I encouraged my patients to journal when traditional therapy was not appealing to them. Some of my patients used writing as an adjunct to traditional therapy, and found it extremely beneficial. From the feedback I received from my patients, my suspicions about the therapeutic effects of writing were confirmed. I would encourage anyone coping with illness, trauma, death, or simply life stress to try jotting down a few ideas onto paper. The following are excellent resources for journaling as therapy:




*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.


Have a Safe and Fun Fourth of July!

MSAA’s offices will closed on Friday, July 3rd, in observance of Independence Day. We will be back to normal operating hours on Monday, July 6th. 

Also please note our new address:

375 Kings Highway North

Cherry Hill, New Jersey 08034

Our phones numbers, email addresses, and website URL (www.MyMSAA.org) have not been changed. Please update your records accordingly.

We hope everyone has a safe and enjoyable holiday weekend!



Life with MS: My 5 Ways to Stay Happy, Lollipops and All

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

jeri blogBut what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

  1. Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
  2. Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
  3. Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
  4. Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
  5. Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. :)

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.



Cajun Cannonballs - FB 2Swim for MS participant Joshua Piro and the Cajun Cannonballs have done a fundraiser every Fourth of July to raise awareness of MS and funds for MSAA’s programs and services. This year, MSAA invites you to join the fun and get cannonballing this holiday weekend in support of the MS community. So grab your friends and family and Cannonball for MS! Submit your pictures by using #SwimForMS on social media and you could win some cool Swim for MS gear. Please visit SwimForMS.org/Support to register today.

Even if you’re not a fan of the water, there is still a way you can get involved and help improve lives today with MSAA. We’re looking for enthusiastic, passionate people like you to join our Street Squad!  Street Squad members work to spread the word about the Swim for MS fundraiser and raise awareness for MS.



Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

matt blog

Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/


How Cool Are You?

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!

Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

  • Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
    • Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.
  • Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
    • Embrace light colors. Dark colors absorb light and heat, light colors reflect light.
  • Search for indoor activities in local shopping malls or stores where air conditioning is always free.
    • Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.

My MS Manager – A Free Mobile App for the MS Community

My MS Manager is the first-of-its-kind mobile phone app designed specifically to help individuals with MS and their care partners better manage the ever-changing course of the disease.

In December 2014, MSAA re-launched the updated app with new features that will enhance usability.The updated My MS Manager app includes options to:

  • Track symptoms and disease activity
  • Input and store important medical information
  • Generate useful charts and reports for easy tracking of treatments, moods, symptoms, and more
  • And – exclusive to My MS Manager – connect directly with your physician via the app to share your progress and reports securely and as needed.

This convenient tool is available as a free download for both Apple and Android mobile devices.

Apple App



If you need assistance with the app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.



MSAA is Moving!

The Multiple Sclerosis Association of America (MSAA) is moving to a new location!

As of Wednesday, June 24, 2015, the address for MSAA’s National Headquarters will be:

375 Kings Highway North

Cherry Hill, New Jersey 08034

Please note that MSAA’s phone number, email address, website URL, fax numbers, and regional office contact information (other than the Northeast Regional office) will all remain the same.

Please update your records with our new address and continue to stay in touch with us!