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.

The Overhead Solution

Posted on November 14, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development

Several of my articles and posts have focused on the Overhead Myth – the commonly held belief that financial ratios are the sole indicator of a nonprofit’s performance. Over the last year, it has become widely agreed that stars and ratios do not clearly communicate a nonprofit’s impact or show that we are meeting our mission.

The Multiple Sclerosis Association of America has joined BBB Wise Giving Alliance, Charity Navigator and GuideStar in the pledge to end the Overhead Myth and move toward an Overhead Solution. Instead of focusing on the percentage of charity’s expenses that go to administrative and fundraising costs-commonly referred to as “overhead”-we need to focus on what really matters: trustworthiness and performance.

Last year, BBB Wise Giving Alliance, GuideStar, and Charity Navigator, published an open letter to the donors of America denouncing the use of the “overhead ratio” as the sole indicator of nonprofit performance. The letter, signed by all three organizations’ CEOs, marked the beginning of a campaign to correct the common misconception about the importance of a low overhead ratio.

A new open letter, published in October on www.overheadmyth.com, educates and encourages nonprofits to work towards an Overhead Solution. Specifically, the letter asks nonprofits to do three things, “(1) demonstrate ethical practice and share data about performance (2) manage towards results and understand your true costs and (3) help educate funders on the real costs of results.” The letter goes on to provide resources to help nonprofits in this critical endeavor to measure and report on what matters most.

Join us in spreading the word about this important topic. Nonprofits and their supporters are encouraged to learn from and share the latest Overhead Myth letter. We’d love to hear your thoughts and ideas. As always, please contact us if you have any questions at all.

Thank you for your support in this effort.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

Accessible Voting

Posted on November 3, 2014 by MSAA

You may or may not know it, but Tuesday November 4th is the day to vote. That’s right – midterm elections are here, and for many people that means they get a chance to make a decision about the makeup of Congress or governorship in their state.

But what do you do if you arrive to your designated voting site and the building isn’t accessible, or there are other problems which would cause you difficulties in casting your vote?

Go to the voting place prepared. You don’t want to be stuck – physically or metaphorically – at the voting site and not be able to cast your vote.

Here are a few tips to make sure your vote is counted:

Make sure you are registered to vote. There may be a specific time frame you must register in advance of a vote, so if you miss out this year, go ahead and register so you can vote in future elections.
If you are not sure, confirm your voting location with your city or county government office. You can also call ahead to ask information about where to park, whether there is accessible transportation, etc.
Get the phone number for your State Office of Protection and Advocacy and bring it with you when you vote. If you run into any barriers (lack of accessible transportation, physical accessibility of the building, problems accessing voting equipment, or understanding your rights), this is the correct office to advise you of your rights under the ADA and make sure you get a chance to vote.

Why go through the hassle of going to the voting booth at all?

Many states allow individuals to register as an absentee voter. Once you get registered, you can remotely cast your vote! For next time, plan ahead and register to absentee vote.

Happy Halloween 2014

Posted on October 31, 2014 by MSAA

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

Remembering the MS Support People

Posted on October 27, 2014 by MSAA

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

Continued Success after Therapy

Posted on October 20, 2014 by MSAA

By: Matt Cavallo

Earlier this month, I wrote a personal story of my positive outcomes with therapy. I utilized Physical and Occupational Therapy, along with Speech Language Pathology to aid in my recovery from neck surgery. This was a scary time in my life, and I was extremely thankful to have each line of therapy to help me overcome my deficits. My personal challenge became what to do once I no longer qualified for therapy visits?

The best way to relate my therapy experience is to talk about my gym membership. I have a family gym membership and make my annual gym appearance sometime in January. Then, I don’t go for the rest of the year. I offer any number of excuses to my wife and kids as I watch them drive off to the gym each Saturday.

The truth is that the only way I would utilize that gym membership would be if I had a personal trainer – someone to look over my shoulder as I exercised that I paid for. Paying for the service holds me accountable and forces me to keep my appointments. I also prefer to work out with a trained professional, who understands my limitations and can design a routine where I won’t hurt myself. The problem becomes I get on a good routine with the trainer, but as soon as I stop using a personal trainer, I stop working out.

This is my same relationship with therapy. While I am actively participating in therapy, I do great. As soon as they give me home exercises, I don’t follow through. I know that the homework given by a therapist is specifically designed to help me functionally, but I just don’t do well when left to my own devices. The problem is that my lack of follow through is detrimental to my health. My neck surgery forced me to change my behavior. Here are a couple of tips that helped me have continued success after being discharged from therapy:

Tips for Continued Success after Therapy:

1. Request clear, written discharge instructions. Your therapist will develop a plan of care that you can continue on your own after you finish all your therapy appointments. Make sure that you get a copy of those discharge instructions at your last appointment.

2. Get a copy of your Home Exercise Program (HEP). Your therapist can provide you home exercise instructions with pictures. These instructions provide a handy reminder of the therapist recommended exercises, as well as a visual reference for how to safely perform the exercise.

3. Make sure you get your questions answered. During your last appointment, make sure that you have a list of questions for your therapist. You will want to make sure that any concerns you have are addressed. There is truly no such thing as a stupid question when it comes to your health and well-being. Even if you think your question isn’t appropriate, you may have a legitimate concern that the therapist isn’t thinking of. I always have my questions written on a piece of paper and take detailed notes.

4. Follow through. Where I am lacking is in the follow through. For my neck, I still have my HEP and discharge instructions. When it tightens up, I know exactly the stretches that help and reference the pictures to make sure I am doing it right. The problem is that if I consistently followed through and strengthened and stretched my neck, then I probably would feel consistently better – just ask my wife!

Therapy is a great start for managing your MS symptoms. Continuing to follow through after you finish therapy is the key to success. Following these steps may help to ensure that you are prepared for life after therapy. Continuing your home exercise program post-discharge will put you in a better position for continued success.

*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/

Feeling SAD: Seasonal Affective Disorder

Posted on October 15, 2014 by MSAA

It is commonly known that MS can impact mood and can cause an increased risk for developing depression and anxiety which MSAA detailed in the Winter/Spring 2014 issue of The Motivator. However, you may be unfamiliar with another condition – Seasonal Affective Disorder (SAD) – which may be something to pay attention to as the seasons change.

SAD is a type of depression which is hallmarked by its “seasonality” generally beginning in the fall and lasting through the winter months. SAD typically tends to creep up as the daylight hours get shorter and the weather gets cooler and the impacts on mood may become more severe as the season goes on. Like other forms of depression, individuals who experience SAD may experience low energy (fatigue), may lose enjoyment in activities they once enjoyed, may experience changes in eating or sleeping habits, may have persistent sad or depressed thoughts, and may even think of engaging in self-harm. As with other forms of depression, individuals with SAD may benefit from the use of medications and/or talk therapy to help address this issue. One major difference with teasing out SAD from other forms of depression is that individuals with SAD may also benefit from using “phototherapy” or specialized light therapy; a person may even be assigned a specific amount time in their day to sit under the specialized light or lamp to help improve their symptoms.

If you have noticed that the fall and winter seasons tend to impact your mood, or if you have noticed a lower overall mood, please discuss the issue with your treating physician…sometimes just shedding some “light” on a situation can make a world of difference.

Swim for MS: Give me a T-E-A-M!

Posted on October 13, 2014 by MSAA

With the start of the new school year and a new swim team season, MSAA’s Swim for MS has seen tremendous support. All over the country, swim teams are working together raising money to improve the lives of those living with MS.

Swim for MS encourages volunteers to create their own challenge, such as swimming laps or set distances over a chosen period of time while collecting donations for their personal fundraising goal. These challenges can be done individually or through group swims by teams of young and old alike. The NCMP Aquagirls, a Girls’ High School Swim Team from Iowa, created an event that would push them into swim shape early while creating awareness and raising funds. Their team captain, Rachel, challenged the team to swimming 50,000 total laps during the month of September. They collected pledges in August and September to raise over $1,000 for Swim for MS.

NCMP Aquagirls

Lexie & Team at her Swim for MS event

Volunteers also raise funds through a variety of unique one-day events such as pool parties, water-volleyball tournaments, and cannonball challenges. Unlike more traditional MS fundraising activities, Swim for MS allows individuals with MS at any stage in their journey – from the recently diagnosed to those with limited mobility – to benefit from water exercise and assist in raising donated funds for a vital cause. Lexi and her Swim for MS Team participated in a one day Swim for MS event held at her high school in Indianapolis and raised over $2,800 in September.

Just because October, November, and December are filled with back-to-back holiday parties, doesn’t mean you can’t organize a successful fundraiser! Stay on top of your game by encouraging a team effort for this fun event. Gather your Swim Team for a fundraising event everyone can do together. Show your school spirit by having a friendly competition between team colors, pick a side, and swim your heart out. Winning team gets bragging rights for the swim season!

On our SwimForMS.org website, you can read the profiles of some of our swimmers. They can inspire you and give you great ideas for your own Swim for MS challenge. We would like to thank everyone who has or will participate in Swim for MS!

A Personal Story of Positive Therapy Outcomes

Posted on October 10, 2014 by MSAA

By: Matt Cavallo

I had one goal for after my anterior cervical fusion surgery: work as hard as I could to return to normal so I could be the dad I always wanted to be. This was not going to be easy. I had a serious neck injury with bone fragments cutting and flattening my spine with every movement. The pain I experienced was intense. Electric shocks shot up and down my body, freezing me in place whenever I tried to move. Instinctively, I held my shoulders tight together when I moved in order to take the pressure off of my spine, but it also made me look like the Hunchback of Notre Dame.

This was no way to live. My sons were only three and one year old, respectively at the time, and I feared that I wouldn’t be able to be the active, involved dad that I always wanted to be. In my deepest, darkest moments, I was afraid that I would become quadriplegic. Unfortunately, my doctors agreed with my fears and recommended immediate surgery. They said my neck problem was related to an earlier MS exacerbation I experienced of Transverse Myelitis and that even picking up my babies the wrong way could leave me damaged for life.

I was scared. I didn’t want surgery, but I also didn’t want the alternative. In September of 2010, I went under the knife. I didn’t know what to expect, but I was also working for a rehabilitation hospital at the time and received a lot of good advice prior to surgery. When I woke up from that surgery, I followed that advice.

First, I had an evaluation with a Speech Language Pathologist (SLP). While many people know that SLPs can work on cognitive and language deficits associated with multiple sclerosis, many don’t know that SLPs can also help with swallowing issues. My SLP coached me how to adapt my swallowing techniques while wearing a hard neck brace. These strategies helped me adapt during my recovery. My SLP also set expectations about what it would feel like to swallow with the titanium artifact in my neck. Without these compensatory strategies learned from my SLP, my recovery would have been much more uncomfortable and I probably wouldn’t have received the proper nutrition. As a side note, I did consult a Registered Dietician about liquid nutrition options before switching to regular food when I was first out of surgery.

Next, I had an Occupational Therapy (OT) evaluation. Learning to adapt with a hard collar wrapped tightly around your neck is difficult. Trying to dress or clean yourself up after going to the bathroom was impossible for me. My OT worked on activities of daily living (ADLs) including dressing and toileting. These strategies allowed me to remain independent with my ADLs post-surgery. Feeling independent with grooming, toileting and dressing helped my confidence. My wife was already having to dress and change my kids’ diapers. I didn’t want her to have to do the same to me. My wife did really step up and help me when I needed her the most, but my OT gave me the strategies to be as independent as possible during my recovery.

Finally, I had a Physical Therapy (PT) evaluation. First, my PT worked on my neck range of motion, turning from side to side, and rotating my shoulders back into place after all the atrophy associated with being hunchbacked. Then, my PT worked on strengthening my shoulders and neck to ensure that my range of motion and shoulders remained intact after therapy. My PT also gave me home exercises designed to keep the area strong and maintain the progress I made from the therapeutic interventions.

It has now been four years since surgery, and I am happy to report that I have achieved my goal. My quality of life is better now than it was prior to the surgery. I believe that I would not have experienced as much success without the help of my therapists. My PT, OT, and SLP each contributed, not only to my recovery, but also, to the strategies that I learned through therapy which I continue to use today. Most importantly, I am able to be the dad that I always wanted to be. I appreciate every day that I can go out and play with my boys.

Measuring Success

Posted on October 1, 2014 by MSAA

Sometimes life can be tough, and we may have to hear feedback that we don’t want to receive or work through challenging situations we don’t want to encounter. Like when the school says that your child is just not able to do what other kids can, or when your boss says that you are not keeping up to the standards the workplace requires, and if something doesn’t change soon, they’re going to have to let you go.

It is never easy or pleasant to deal with times where your “actions” or a loved one’s “actions“ are not “measuring up” to the expectations of what is required in a situation. This may occur when a real issue arises, i.e. if you are a nurse you need to have the ability to properly measure medications, and not doing this in a proper way can lead to major harm, or if your child needs a specific educational plan of action and you don’t get them help, it could be a big disservice.

Alternately, these types of situations can occur when the other person has a different “measuring stick” than you do, like if your old boss understood that you needed to take an afternoon break to be recharged and on your game for the rest of the day, but a new boss is inflexible and slams your work performance for taking a break. This type of situation can lead to major frustration and anger on both sides of the coin. The new boss has a different measurement they are using for success.

So, when it is not just a situation you have to own up to or seek support to overcome, how do you get the other party who is using a different measuring stick to see reason? First, check your own thought process by bouncing the situation off of a trusted friend, family member, or co-worker. Do they agree that you are being reasonable, or do they bring up good counterpoints for you to consider? Second, check for any formal supports or avenues for recourse. This might include documenting this situation and your concerns, or seeking out formal supports. In this workplace scenario, it might include talking with HR and asking for a formal workplace accommodation. It may also include you documenting your work actions more carefully or capturing feedback from clients or co-workers about your work to allay concerns presented by the new boss.

Not every difficult situation can be resolved, especially if neither person can compromise or shift how they are measuring success. You can do your part by being proactive in trying to see how the other person is viewing the situation, and trying to present your own views and insights in a clear and rational manner. Sometimes even simply acknowledging that you are looking at the situation from two different vantage points can allow enough of a bridge to achieve some type of workable solution.

MS Means Managing Your Energy

Posted on September 29, 2014 by MSAA

By: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

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