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.

Wellness Covers A Wide Field

By Lauren Kovacs

Staying well encompasses physical and mental skills.  Everyone has different needs and tricks.  The key is to find what works for you.  Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’.  Eliminating it completely caused massive weight loss.  I figured it out when my beloved donuts caused me to be super floppy.  It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years.  It improved my gait, when I had one.  After years, I had to give it up.  I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going.  Yoga helps, if you have energy.  I like seated Yoga or I find exercises geared to seniors.  I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch.  I am in a different body, after lunch.  I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids.  Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself.  We are standing in front of a pitching machine.  It takes a lot of practice and there is a learning curve.  You have to be ready to take a hit too.  Strategy is important.  Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you.  Days where you strike out miserably are going to happen.  Maybe the pitch hits you and you have a bruise, but you advance to first base.  You now have knowledge about avoiding that situation again.  In my case, I learn to avoid a fall that way again.

Learn to treat yourself.  Cheer yourself on out load.  Positive affirming words to yourself out load can have a big impact.  Just like a cheer squad helps to push a team forward, cheer for team YOU.


2017 Art Showcase Submissions

MSAA is now accepting submissions for the MS Ability Showcase and the Four Seasons Showcase!

A Panda Named Roni - Susan Russo

A Panda Named Roni by Susan Russo

MSAA welcomes paintings in oil, watercolor, and acrylic, as well as pastels and drawings in pencil and ink.  MSAA also accepts digital artwork.

Artwork will only be accepted from individuals who have MS. Submitted pieces must be two-dimensional. Sculpture, pottery, fabric, and other types of three-dimensional works cannot be accepted to either showcase. The MS Ability Showcase is open to all themes; however, submitted artwork to the Four Season Showcase must depict a specific season or holiday.

Snowy - Paula Breiner

Snowy by Paula Breiner

Submissions will be featured on MSAA’s website beginning March 2017 in recognition of MS Awareness Month.  Each month we will highlight one artist and his or her work.

Submissions will be accepted between now and December 16, 2016.

Submit your best work and view complete submission guidelines at support.mymsaa.org/showcase!


Read the Latest Issue of The Motivator

Service Animals and MS – read the newest Summer/Fall 2016 issue of The Motivator, available now in print and digital editions.

motivator-sf16-spreadRead about the following articles in this issue of The Motivator:

Cover Story:
The Joys and Challenges of a Service Dog Partnership
Dr. Darbi Haynes-Lawrence takes readers along her eventful journey to partner with a service dog, encountering many benefits and hurdles along the way.

Up Front:
MSAA’s President and CEO Gina Ross Murdoch talks about record-breaking outreach, a new online community, and upcoming events to support MSAA’s vital programs and services.

Research News:
Information is given on newly approved Zinbryta™ (daclizumab) and two investigational medications, Ocrevus™ (ocrelizumab) and siponimod.

Read the latest issue at support.mymsaa.org/motivator.


My Wellness Litmus Test & Sphere of Wellbeing

By Stacie Prada

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content?  Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner?  Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy.  After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy.  But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times.  It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/


Columbus Day

Please note that MSAA will be closed on Monday, October 10, 2016 in observance of Columbus Day.  Our offices will reopen on Tuesday, October 11, 2016 at 8:30 am (Eastern).

If you have any questions, please feel free to call and leave a message on our Helpline at (800) 532-7667, ext. 154 or you can email us any questions at MSquestions@mymsaa.org.


The Call of the School Supplies

By Lauren Kovacs

We all dread it, as parents.  The school supply trip.  It beckons us and sinks its teeth in.

With three kids, this trap is one I can’t elude or ignore.  I try to do it in one trip, however I usually go to a dollar store first.  A big box store is my final stop.

Going early in the morning helps avoid oppressive summer heat.  My kids are on a year round schedule and it is a must.  I like to avoid the real scary call of the wild by not going later in the day.

I have recruited my little troop of squirrels.  They each are sent into the shelves to finds an item, while I am the list holder.  I busy myself by looking at the new boxes of crayons.  Even though they are past using them, a box always shows up in our bags at checkout.

I coordinate from my wheelchair.  Once they find their nut (supply), it goes into the cart.  After our adventure is complete, I reward them with a treat (candy) and the call of the school supplies is silenced.

There are always random things a teacher wants.  I turn to the net for those.  It saves me a trip out.

Reward yourself.  Buy a muffin or donut for yourself.  It takes work to get those supplies.  Share in the joy of new school stuff by treating YOU.


MSAA Presents S.E.A.R.C.H.™ Live Webinar

msaa-search-graphicWhile having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

  • Review the current landscape of MS therapies and those on the horizon
  • Discuss the importance of having a good doctor-patient relationship
  • Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
  • Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.


MSAA Joins Revlon 2016 Challenge

MSAA is excited to be a part of the Revlon LOVE IS ON 2016 Million Dollar Challenge!  From now until October 26th, MSAA and other organizations focused on women’s health are competing to raise the most money for a grand prize of a $1 million donation to their cause. In addition to the grand prize, throughout the fundraising competition, there will be mini bonus challenges with $1.4 million in additional prizes for the winners of these weekly or daily challenges.

revlon-love-is-onYou can get involved and help MSAA win the $1 million donation to fund our free programs and services including: cooling vests for heat sensitive individuals, MRI assistance, toll-free Helpline staffed by trained specialists, assistive devices, in-person educational events, award-winning videos and publications, and much more.

How You Can Help

Help MSAA improve more lives (and “Love”!) in the MS community today, by spreading the word about the Revlon LOVE IS ON 2016 Million Dollar Challenge!


Creating Some Order in the Medical Billing Chaos

By Stacie Prada

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and it has since evolved to a pretty simple method it works for me.

Medical Billing Tracking Example

Medical Billing Tracking Example

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4×6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

  1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
  2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment.
  3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
  4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
  5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
  6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
  7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan.
  8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call MSAA to see if they offer assistance or if they can suggest another organization that may be able to help.
  9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
  10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

  • Deductible amount for each year
  • The out of pocket maximum your policy covers, if applicable
  • If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming.

Blank Medical Billing Tracking Checklist

Blank Medical Billing Tracking Checklist

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/


Special Swim for MS Swimmer Honored by the Military

Almost all of our Swim for MS participants have had some kind of personal connection to multiple sclerosis – whether a family member was diagnosed, a friend, or they themselves have MS.  In this way, Team DragonFLY Captain, Courtney Evers, is no different.  When her mother was diagnosed in 2005, Courtney and her family turned to MSAA for information about MS.  After spending years on our website using MSAA resources and repeatedly seeing information about our Swim for MS program, Courtney decided to start her own.  “It was something I could not only do for my Mom, but that she could be a part of, too,” says Courtney.

Courtney’s mother (left) swam the most distance of the team last year!

Courtney’s mother (left) swam the greatest distance of the team last year!

What does make Courtney Evers different from other Swim participants is that she was recently awarded the Military Outstanding Volunteer Service Medal for her volunteering efforts, including her years as the captain of her Swim for MS events.  Since 2011, Courtney and her teams have raised more than $7,500 for the MS community by swimming in New York, Hawaii, and everywhere in between.  When asked about receiving this special honor, Courtney said:

“The Swim for MS part of my MOVSM was by far the most meaningful, because it was something that really ‘hit home’.  Not only was my team helping raise awareness, but the funds raised were actually going to those that needed it with MS.”

Please join MSAA in thanking Courtney for her service to her country and for her commitment to the MS Community and improving lives today!

unnamedTo learn more about starting your own Swim for MS, please visit SwimforMS.org.