About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Changing Seasons and Changing Routines

Posted on September 25, 2017 by MSAA

Fall is upon us and as the leaves change color and pile up on lawns across the neighborhood, parents and kids are begrudgingly adjusting to a new school year routine. Humans and animals are naturally creatures of habit – just ask a toddler or a pet during Daylight Saving Time – and changing up a routine can be stressful for anyone.

When you are living with a chronic disease like MS, a change in your daily routine can do more than just throw you off-balance for a day or two. Whether you are going through an employment change or you need to switch to a new medication with a different dosing schedule, there are some small things you can do to help yourself adjust to a new routine:

Start Small – Whenever there are big changes, it can feel overwhelming to focus on everything at once. Instead, try focusing on one small change or task at a time. You can feel more accomplished as you cross each individual task off your to-do list.
Use Your Current Routine – Sometimes, the easiest way to establish a new routine, is to adapt the one you already have in place! For example, using your favorite TV show or weekly lunch with a friend as a reminder to take medication can make it easier to keep yourself on track.
There’s an App for That – Just take a scroll through the app store for your phone or tablet and you can find many different options to help you organize your day or manage your medications, including MSAA’s My MS Manager™ app. These apps can help you ease into your new routine by setting reminders and audio alerts on your phone or tablet.
Don’t Be Afraid to Try Something New – Change of any kind can make us feel uncomfortable or afraid because we don’t know what to expect, but that’s ok. Depending on how dramatic the change is, it can take up to 3 months for a new routine to feel like a habit. So don’t get discouraged if you aren’t feeling comfortable yet with your new routine. You may just need a little more time!

Change is almost always hard, even if that change may be for the better. With a few of these strategies, hopefully, you can more easily navigate whatever life throws at you today.

Changing Routine

Posted on September 22, 2017 by MSAA

By Lauren Kovacs

I was employed outside the home years ago, but I chose to stay home when I started my family. Just when I was ready to go back, after 12 years, the MS had other plans. Routines and MS are a must, for me now. I love routine! I can’t do “last minute Lucy” or be spontaneous.

I have the same foods for breakfast and lunch. This helps me keep my bowel routine. If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home. I love junk food. Gosh, I love it. I really love gluten too.

I nap at the same time everyday. Even my dog knows when naptime is. I schedule everything before noon. Even Provigil let’s me sleep. Routines are essential.

You do have to bend the routine at times, however. Just make sure you have a plan, if your routine takes an unexpected turn. Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.

A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan. I ate out and while it was tasty, the gluten boat threw me in with the chum. More MS sharks circled.

It took days of fatigue, tears, stomach issues and fights with other germs to come out on top. I conquered the mountain. When I only needed one nap a day, I knew the current was changing.

Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it. I still was face down in the bed trying to get a nap. Alas, I was finally able get into the bed and didn’t need to sleep on the floor.

MS is not glamorous. Have plan B and C. Routines are wonderful, but have a back up plan or two or three. Being thrown off a cliff might seem ok, if you can climb up. Once you make it to the edge safely, then what? Don’t think that because you feel ok that you are.

MS Skills

Posted on September 20, 2017 by MSAA

By Doug Ankerman

It can be difficult to accept when multiple sclerosis steals your ability to work. A lifetime of training and talent gone. Poof. I know it was for me after giving over twenty years of sweat and soul in radio and advertising.

But because you have MS doesn’t mean it’s over, man. You simply need to change your perspective.

Having MS has given me (and probably you) a whole new skill-set from which to draw upon.

Let me explain with a tongue-in-cheek look at an MSer’s new level of expertise…..

Meticulous Note Taker: You write down everything to recall dates, times, appointments, names, to-do, shopping lists and more. Sticky notes are your blessing. And because your handwriting is so sloppy – only YOU can decipher your scribbles.

Medical Equipment Operator: You are quick to determine which piece of equipment you will need to accomplish a task. “I have the energy to walk today with canes.” Or, “I feel weak so I’ll use a scooter.” Also, you are the only one who knows how to properly collapse a rollator/wheelchair.

Personal Charging Station: You can doze off anytime, anywhere, in any situation or body position. Only you can snooze in a straight-back chair. Ten minutes to recharge and refuel and you are good to go.

Pro MRI Taker: You have done this so many times there is no fear of the tube. You thumb your nose at a Contrast. By knowing the difference of the machine’s bings and boings, you know when you can wriggle, shift and scratch.

Restroom Consultant: Because of MS, you have tried them all. Therefore you know the best and the worst. The clean and the filthy. The accessible & the not so. Because of your expertise, some call you the “Triple A” of public bathrooms.

Floor Surface Evaluator: You have the ability to determine the walk-ability of the environment. You are alert to surfaces that are rough, slippery, thick, plush, wet or uneven. Uphill and downhill are no match to an MSer’s precise judgment.

Finally,

Stain Lifter: As one with MS you know how to get out food stains. You know when to blot and when to dab. When to rinse in cold water or when to pre-soak. While some carry an EpiPen, those of us with MS are never far from a Tide-To-Go. Being sloppy has a down-side, but an MSer is always prepared.

See, you DO have skills and talents that set you apart from the rest. Most importantly, you have the confidence to look MS in the eye and prevail. Multiple sclerosis can’t take your determination, intelligence, or guts unless you allow it. Hold your head up. Be proud. And keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

The Best Next Turn: Changing Careers

Posted on September 13, 2017 by MSAA

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers. While I still work in the same organization, I work in a completely different field. Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility. I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle. That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week. Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people. I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire. My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself. When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
Be open to opportunities that surprise you and haven’t occurred to you.
Do a good job wherever you are on whatever you’re doing.
Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment. If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start. As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

*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/

MSAA’s Newest Publication – MS Relapse Toolkit

Posted on September 8, 2017 by MSAA

We are pleased to announce our latest booklet, the MS Relapse Toolkit. This useful, spiral-bound resource provides information on why relapses occur and what you can do in advance to prepare for these unexpected and often significant flare-ups in disease activity.

The MS Relapse Toolkit includes:

In-depth details on relapses and symptoms
Checklists to share with your doctor and your family
Items to discuss with your healthcare team
How to plan ahead for a possible relapse
A listing of FDA-approved and experimental treatment options
Crossword puzzle with relapse-related terminology

Check out this newest resource and view or order you copy today!

Funding for the MS Relapse Toolkit was made possible by Mallinckrodt.

Ask the Expert – Temperature Dysregulation

Posted on September 1, 2017 by MSAA

Featuring Marie Namey, RN, MSN, MSCN
Mellen Center for MS Treatments & Research, Cleveland, OH

Question: I find that I am often hot, then cold, then hot again. It seems my internal thermostat is messed up and I am well past menopause. Is this caused by MS and why?

Answer: You are not alone in experiencing these symptoms. We often hear from our patients that they feel hot or cold for “no good reason.”

The medical term is “temperature dysregulation,” meaning that it’s difficult for the body to maintain normal temperatures and results in periods of feeling hot or cold when there has been no change in the actual temperature indoors or outdoors. MS can cause temperature dysregulation. This temperature dysregulation can also make MS patients susceptible to extreme hot or cold.

Some individuals with MS may have impairment of autonomic functions, the functions that are not thought about consciously for the systems to work. Autonomic dysfunction develops when the nerves are damaged. Interestingly in a recent “Patients Like Me” survey, 69% of patients with MS who replied said that their temperature dysregulation is severe or moderately severe.

Also to avoid attributing every symptom to MS you should be checked for other causes of your symptoms such as anemia, thyroid disease, poor circulation, malnutrition, diabetes, or vitamin deficiencies. I always recommend regular health checkups and open dialogue with your MS health care provider and primary care provider.

Relationships and Multiple Sclerosis

Posted on August 28, 2017 by MSAA

By Ashley Ringstaff

Living with multiple sclerosis is life changing for the person diagnosed, but it is also a change for our loved ones as well. I often tell people that my loved ones “Live with MS” also, because it is now a part of their lives for the long haul. It’s a learning experience and modification time for all involved. Things change when we least expect it as well, that will need modifications along the way. Meaning, if we relapse, new symptoms occur, etc.

I can honestly say that when I was first diagnosed that I pushed people away, especially my husband. I was only 22 at the time of diagnosis, and I felt like I didn’t want to make him deal with this at such a young age as well. Luckily for me, he is very stubborn and didn’t allow me to push him away, and for that I’m grateful.

There were people close to me at the time of diagnosis, which I no longer associate with. It was not my choice to no longer be friends with them, but things happen. It hurt, to have people abandon me at such a crazy time in my life. I understand now that not everyone can “handle” multiple sclerosis, even indirectly.

The state of mind I had when I was first diagnosed – I was very depressed, as well as angry. I couldn’t even tell you which emotion I was feeling more of at that time. They were pretty much dead even, but one would be more prominent at times, depending on the situation.

Many people, including myself, will tell you that you find out whom your true friends are when faced with such a life-changing event. I’ve made new friends since my diagnosis, and I have come to tell people straight off the bat that there will be times that I have to cancel last minute on plans, or I can’t give a 100% answer on if I can go to an event or not, because it all depends on other factors. Is the event outside, is it very hot outside, etc.

If you’re reading this, and you are in a relationship with someone that has MS, please be patient, especially if they are newly diagnosed. For those of you that are friends with someone that has MS, in a relationship with them, related to them, etc. Please be patient in general. Also, take the time to try and understand what we’re going through as best as you can. It makes it easier for us to vent and talk to you, when you have some sort of knowledge about multiple sclerosis, and how it affects us on a daily basis.

I have a friend that I don’t get to see as often as we would like, but she still texts me or calls me just checking on me… seeing how I’m doing… Do I need anything? I can’t even being to explain to you how much that means to me, and to many others living with MS. Just having someone there for us, it can mean the world.

For those of you that have been diagnosed with Multiple Sclerosis, you are not alone. You have so many of us out here in the MS community that will be there for you and talk to you, and just let you vent… we may need to vent in return. I’ve had so many people message me on social media, and are so glad that they have someone to talk to about this illness, that “get’s it”. Also, know that those around you might want to be there for you, but they just don’t know how. You need to let them know what they can do help you out, or even suggest some things they can read, etc. I know it’s easy to isolate ourselves, to avoid people leaving us in the long run… but then you have no one there for you in the end.

There are so many resources out there that offer ways for you to build relationships with others living with MS in your local community, online, etc. Here is a listing of the organizations apart of the MS Coalition, click here. Here is another listing as well, click here.

Whatever you are feeling and/or going through, it is never ‘wrong’. You have the right to feel certain ways, and we can’t control the way MS affects each and every one of us. We are all affected differently, but we are all in this together. I can honestly tell you that many people that I’ve spoken to with Multiple Sclerosis, want to hand out the “MS &Things People Should NOT Say” list to their loved ones, and other articles I’ve written on MultipleSclerosis.net. There is also a list my good friends and fellow writer, Cathy Chester wrote called, “What People SHOULD Say to Someone Living with Multiple Sclerosis.” This is a good article to read for the friends and loved ones of someone living with MS.

I hope you enjoyed the article, and please feel free to reach out to me on my Facebook page if you ever just need to chat.

*Ashley is a 29 year old from Central Texas, that was diagnosed with RRMS in August 2010, at the age of 22. She is a mom of two boys and loves to read & write in her spare time. Ashley is a blogger for MultipleSclerosis.net, you can view her blogs here. Her writing is mostly written with a sense of humor and personal experiences.

Me, Myself, and MS

Posted on August 25, 2017 by MSAA

By Marc Stecker

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are our relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, “the wound is where the light enters.”

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns-and-rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within

*Marc Stecker lives with his wife in New York City. He was diagnosed with Primary Progressive multiple sclerosis in 2003, and started writing his MS themed blog, Wheelchair Kamikaze, in 2009. As the name of his blog implies, Marc enjoys scaring the bejeezus out of pedestrians on New York City streets by zooming past them in his power wheelchair. To date, there have been no fatalities.

Stepping Outside My Comfort Zone – A Daughter’s Story

Posted on August 23, 2017 by MSAA

By Rachael Scharett

A father is a very important role in a young girl’s life. I remember growing up thinking that no one was as strong or capable as my dad, Dan Scharett. He worked hard to support our family. He built the house I grew up in and he even came home from work and chopped wood for the wood stove we used for heating. I knew there was nothing my dad couldn’t do. Then, when I was still quite small, the most shocking thing happened; my dad broke his leg while playing softball at a family function. He had been running to a base and when he turned, his one leg didn’t, and it snapped. While everyone else simply thought nothing of it, I cried nonstop. He was a superhero and to see him get injured was something I couldn’t comprehend. What we later learned was that he had been experiencing numbness in his feet and legs which ultimately caused his fall; numbness caused by multiple sclerosis.

As a family, we’ve spent 25 years watching his gradual decline. The man who could do it all slowly lost his ability to chop wood for the wood stove, he couldn’t climb the stairs in the house he built, and now he can’t even stand. Despite this, he still laughs every day. He jokes around with our family, friends and neighbors. He still pushes himself to do things around the house and yard that even the healthiest individuals would hire someone to do. It was his motivation and drive that inspired me to run the Dopey Challenge at the 2018 Walt Disney World Marathon. Seeing him fight to live a fulfilled life despite his MS motivates me to do things I would normally consider too hard. I wanted to run with Team MSAA during this event to help raise money in my dad’s honor, so when I saw the Dopey Challenge, which consists of a 5K, 10K, Half Marathon and Full Marathon, totaling 48.6 miles, I knew I had to choose that event. I am by no means an athletic individual, but if he can push himself every day, then the greatest thing I could do to show my appreciation for all he has done for our family, is to run the furthest and push myself outside of my comfort zone.

I truly hope that one day a cure will be found for MS but until then, organizations like the MSAA are a great resource for families like my own. I am proud to be able to fundraise and contribute to such a wonderful organization…. My dad will be there when I cross the finish line, supporting me, just like he has always done; after all, he is still my superhero.

*Rachael is participating in the Dopey Challenge as a member of Team MSAA during the Walt Disney World® Marathon Weekend presented by Cigna®. To learn more about Rachael’s run or support Team MSAA, please check out her personal page.

Creating Relationships with MS

Posted on August 21, 2017 by MSAA

By Laura Kolaczkowski

When we talk about relationships it’s easy to immediately think of partners, children, and other family members and how our time with them is impacted by our multiple sclerosis. The twitter hashtag #WeHaveMS rings true because having MS affects everyone in our close family circle.

Then there are other relationships that develop because of our disease – that would include the ongoing contact we have with our care team. Our neurologists, nurses, medical assistances, billing clerks, and everyone else in the MS clinic are people we become familiar with and dependent upon in more than a passing basis, and we develop a long-term relationship with them as well.

As important as our family and our providers are in establishing and maintaining healthy relationships, there is one group that holds more importance than these others – that would be the people who make up the MS community. People living with MS understand what it’s like to live with this disease, the struggle to make peace with this disease, and how to celebrate and live a full life in spite of this disease.

The relationships I have within the MS community are some of the strongest and most important in helping me to live in a positive way, despite having MS. I’m fortunate to have made friends, thanks to my MS, who are usually available at any time to stop what they are doing to take my phone call or answer an email.

Many of these friends I have never met in person, but we have that common bond of living with MS that cement our relationships. More than once my family has looked at me as if I’ve forgotten all the warnings of “stranger danger” and the internet safety while I’ve forged new friendships and comfortable relationships with total strangers.

Being alone with a chronic disease, and particularly with MS, can be bad for us psychologically and often even our physical health can suffer. Creating relationships with others who also happen to live with MS gives us strength in many ways that can’t be measured but is felt deeply. If you don’t already have a special relationship with another person who has MS, I strongly encourage you to join a local support group, an online forum, or even one of the many Facebook groups that focus on multiple sclerosis. Lasting relationships might not develop quickly because those have to be tested over time, but stick with it and I have no doubt you will connect with people of kindred spirit.

*Laura Kolaczkowski was diagnosed with MS in 2008. She is the co-principal investigator for iConquerMS and the lead patient representative. Her interests have taken her into the world of patient centered research, which is meant to deliver answers that are meaningful to the MS community. She is medically retired from the University of Dayton thanks to her MS, and lives with her husband in Ohio. She invites you all to join iConquerMS and help solve the mystery of MS.

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