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.

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!

 

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Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: http://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*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.

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How MS Taught My Son a Life Lesson

By: Jeri Burtchell

I’ve discovered that children born to people with chronic conditions are often the most empathetic and compassionate people I’ve met. You can give kids life lessons when you’re in the grocery store and see someone using a cane or a wheelchair, but nothing quite explains the real everyday hurdles like living with someone who has a chronic illness.

I have two boys. My older son, Mark, was 16 when I was diagnosed. The younger one, Alix, was just six months. Mark was your typical teenager: independent and active, with a big circle of friends and activities that kept him busy outside the house. By the time Alix was a preschooler, Mark had moved out to begin his own journey into adulthood.

It was like raising two “only” children, with one big difference – the second time around MS was calling the shots.

Alix never knew me any other way, so the fact that I used a cane, or occasionally needed a wheelchair was just normal to him. He’d sit in my lap and ask me to take him for a ride. He didn’t see me as different. Nobody whispered to him “it’s not polite to stare”. When he looked at me, he saw his mom and nothing more.

He’s a junior in high school this year, taking honors classes. Tonight we’ll be attending an award ceremony where he’s receiving a mystery award. He’s been an easy kid to raise. Never gets into trouble and is always around the house helping out. He’s cheerful and never complains no matter how much I ask of him.

Things haven’t always gone smoothly, though. When he was in sixth grade he was having a hard time. The transition to a new school with new friends was a lot for him to handle. When it came time to attend one of his band performances at school, I really struggled over whether I should bring my cane or not.

I didn’t want him to be teased for having a mom who was different, but neither did I want to fall down. Which would be more embarrassing to his middle school mind? I decided to let him choose.

We stood by the car and I whispered to him, “should I just leave my cane here and ‘wall-walk’ where I can?,” and he looked puzzled.

“Why would you do that? Don’t you need your cane?,” he asked.

“Well, I don’t want to embarrass you, you know, if the kids tease you because of this or something.”

He became really indignant at the thought. “Just LET someone say something, Mom! Nobody’s going to make fun of you. What kind of person would do that, anyhow?,” he asked.

I used my cane and he took my other hand, proudly.

That was just one special moment among many that made me see that having MS has not always impacted our family negatively. Do I wish I didn’t have it? You bet! Does Alix sometimes feel “ripped off” that he didn’t get the younger, healthier model of Mom than Mark did? Yep.

But we do what we must to live the best life we can despite MS, and in the process it has helped shape my son into a fine young man who I know will always wear his compassion and empathy like a badge of honor. It’s who he has become, and I’m proud to be his mom.

So for those who have small children and wonder how your MS will affect them as they grow up, take heart. I bet they will be amazing, too!

*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.

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Splash for Multiple Sclerosis on Memorial Day

This Memorial Day, MSAA invites you to join our team and help us make the BIGGEST splash yet! Whether you’re a swim enthusiast or just enjoy the water, there are numerous ways you can participate and be a part of MSAA’s Splash for MS Memorial Day Team.

Here’s how YOU can participate:

  1. Register on MSAA’s Splash for MS Memorial Day Team today and get your Swim for MS swag to show off while you’re having fun in the sun.
  2. Make a donation to the event! Click here to make a donation toward our goal.
  3. Already registered to Swim for MS? Email us at swim@mymsaa.org and we’ll add you to MSAA’s Splash for MS Memorial Day Team.
  4. Tweet, Instagram, or Post a picture of you and your friends and family making a splash on Memorial Day! We will be posting pictures of team members showing their support for the MS community all across the country so don’t forget to check out MSAA on all your favorite social media platforms! #SwimForMS #MemorialDaySplash
  5. Don’t have a pool? No problem! Get in on the fun at your nearest beach, river, or even your backyard Slip ‘N Slide! Take a dive, swim laps, dip your toes in the water, or just float your way through Memorial Day.
  6. Any Pool, Any Time, Any Way you Swim for MS helps Improve Lives Today!
  7. The first 10 people to register by May 15th will receive a very cool Swim for MS carry-all cooler chair!

The great thing about this event is that you can choose how you’d like to participate – swim laps, makes some waves in the ocean, or run through the sprinklers with the kids! Click here to register today!

 

Don’t forget that Swim for MS is a year-round fundraiser. Even if you can’t participate this month, any time is the right time to dive into action to show your support for the MS community. Any pool, any time – the choice is yours!

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Mothering Through MS

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..

*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.

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Highlights from MSAA’s Improving Lives Benefit in Washington, DC

On April 22nd, MSAA held the second annual Improving Lives Benefit at The Pavilion at the Ronald Reagan Building in Washington, DC. It was a wonderful evening filled with good food and fun – all in support of a great cause! The funds raised from the event directly support MSAA’s free, vital programs and services.

Honorees - Doug - Sue

(Pictured from left: MSAA President & CEO Doug Franklin, Honoree Kristen Adams, MSAA Board Chair Sue Rehmus, and Honoree Dr. Randall Schapiro)

This year, two special people were honored as MSAA champions for their accomplishments, commitment, and support of the MS community.

Dr. Randall Schapiro, MS neurologist and member of MSAA’s Healthcare Advisory Council, was honored for his dedication and contributions to the MS community. Among his many notable accomplishments, Dr. Schapiro founded the first comprehensive MS center in 1977, participated in numerous research studies, and helped to develop two MS organizations. Through his years of service, he has come to recognize the importance and impact a “team approach” can have in helping the MS community.

“That’s the way we’re going to make progress. That’s the way we have success in dealing with a difficult disease. So I’m appreciative, very appreciative, of accepting this award on behalf of my team; all of the team; all of the people that have been involved with me and helped me.”

–Dr. Randall Schapiro

Also honored was Emmy award-winning network producer and writer, Kristen Adams. Diagnosed with MS in 2008, Kristen serves as an inspiration to all who hear her story. In early 2014, Kristen played a major role in helping to launch MSAA’s Why I Swim initiative by producing and starring in nationally broadcast videos to inspire others to share their stories.

“I can be a good example. And I know now why that is important and why I continue to do that. And I am deeply grateful to MSAA for allowing me the opportunity to do that. Thank you.”

–Kristen Adams

This year’s Improving Lives Benefit would not have been a success without the support and generosity of our donors. With the help of our supporters, MSAA was able to raise more than $115,000 – which will make a tremendous difference in helping to provide vital programs for so many people affected by MS.

Thank you!

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Latest Issue of The Motivator Now Available

The Winter/Spring 2015 issue of The Motivator is now available! Request your copy today or read it online with the all new digital edition! You can access the digital edition right from your desktop or mobile device and enjoy enhanced interactivity and special features such as tools to search for specific terms, change the font size, and add your own notes.

Motivator digital

Read about the following topics in MSAA’s latest issue of The Motivator:

Motivator Winter Spring 2015

Cover Story:

Cognitive Issues with MS: Research, Strategies, and Support

…A common symptom of MS, cognitive issues may impact many areas of one’s life, including employment, relationships, adherence to medications, and other activities of daily living. This article details current research into cognition and multiple sclerosis, while providing strategies and support for reducing the effects of this often-challenging symptom.

Read the full story

Stories to Inspire:

…Following a severe relapse, Tina was left with loss of vision in one eye, dizziness, and balance problems. She had no idea that seeing-eye dogs are also trained to help mobility and balance. With her service dog by her side, Tina is ready to conquer the world!

Read the full story

Program Notes:

…Updates on MSAA’s programs are featured, including the MRI Access Fund, details on how to request cooling accessories to relieve heat sensitivity, and more.

Read the full story

Read the latest issue of The Motivator – and be sure to check out the features in the NEW digital edition!

 

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Getting My Act Together: Staying Organized Despite MS

By: Jeri Burtchell

It’s easy to let fatigue be my catch-all excuse for why things are in disarray around here, but if you’ve known me for more than 16 years I’m not fooling you. Actually, I prefer my mother’s excuse for why I’m not very organized…

“You’re an artist, Jeri, and artists tend to be messy because their minds are busy creating.”

Sometimes, though, it seems my messy ways have only created more headaches and hurdles for myself — something I seem to have less patience for as time goes by.

I’ve decided to try a new tactic, though. It’s called “be kind to yourself.” So now, when I see self-made obstacles to stress-free living, I try to take off my blinders and correct one small thing at a time, making my living space – and my life – more “Jeri-centric”.

Case in point: Every time I need a pen I head for the three side-by-side pen cups on my desk. They are overflowing with pens I’ve collected on trips out of town and harvested from the copper-rich soil of pennies at the bottom of my purse, where together they perpetually weigh down my every move.

In what has become an exasperating ritual, I select a pen, begin to write, only to run out of ink three strokes into my thought. Frustrated, I put the pen back in the cup and select another. I’m often doomed to repeat this process four or five times before chancing upon a pen that can outlast my need for ink.

When my brother recently visited, he noticed this ritual, and asked me why I didn’t just toss the ones that don’t work. Such a simple, logical question and yet it had never occurred to me. Most likely because tossing the pen meant being near the trash can and required additional physical exertion. Yet in the grand scheme of things he was right.

Immediately I took all three cups to the kitchen counter where, one by one I assessed their capabilities by scribbling on a notepad. If it didn’t produce, it faced instant death by trash. In the end I had one pen cup full of pens that write, and had freed up two coffee cups.

I felt so good about that accomplishment, (and the way I am rewarded with ink every time I grab a pen to jot a note), that I’ve decided to see where I can make other small adjustments to be kind to myself. Here are a couple other ideas that I came up with. They might seem like “no-brainers” to a more organized person, but to me they were epiphanies that keep on giving, making me appreciate each day how thoughtful I was to make these small adjustments in my recent past.

● I went through all my spiral notebooks I keep around for work and ripped every page out that had anything written on it. Then I created project file folders, sorted all the notes for each project, and filed them. Now I no longer spend half an hour leafing through notebooks frantically trying to find minutes of a certain conversation.

● I went through a couple of piles of “chronologically filed” papers I’ve been meaning to go through and made three stacks: 1) Important/Save, 2) Needs Action and 3) No Longer Relevant/Trash. Things like the deed to the house and my passport went in the first stack, bills to pay went into stack two, and expired coupons, magazine subscription offers, or grocery lists from a month ago went into stack 3 (a.k.a. the trash can).

It’s amazing how easy it is to stay up on paying the bills now that I know where they are! And when it was time to take my son to get his Learner’s Permit at the DMV, I knew without a doubt where I could find all the necessary proof of ID for both of us.

My new hurdle is maintaining this level of order. But I’ve discovered that if I spend a little time at the end of the day making sure my work area is organized and the papers are filed it’s amazing how easy being kind to yourself can be.

Herding all the pens back into the cup corral at night and leaving myself a to-do list for the next day makes waking up the next morning a whole lot easier. It’s like I’m finally working with myself instead of plotting my own destruction.

So be kind to yourself and spend just a little time organizing a bill-paying station or home workspace with all of the things you might need. Cutting back on clutter-induced stress can have lasting benefits. Now if the bills would just pay themselves I’d be all set!

*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.

 

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MSAA’s MS Research Update Now Available

Research_Update_2015_email_BUTTON1The 2015 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on FDA-approved disease-modifying therapies, as well as study results on many experimental treatments currently under investigation. This update also presents directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and more.

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

Read MSAA’s latest MS Research Update here.

 

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Worth Fighting For

By: Matt Cavallo

There was a touching moment at my last neurology appointment. You see, I have been with my same neurologist since moving to Arizona in 2009. Throughout the years, he has been by my side through good and bad times. This time was different. He seemed less like my neurologist and more like he was proud of me.

In 2010, I was suffering from severe spinal stenosis due to a bone fragment that had chipped from my C6 vertebra. I required emergency neck surgery or faced the risk of being quadriplegic. After surgery, I fell into a state of depression. Relapse after MS relapse building to a surgical climax, I just felt like my quality of life was never going to be what it was before having MS.

I was ready to give up on myself. Not only that, but I was ready to give up on my MS treatment, as well. And I did. I was required to stop my treatment prior to surgery. Post-surgery, I didn’t want to restart my treatment. I had had enough. I was sick of feeling like a science experiment or a pin cushion. It seemed like even though I was on a treatment that another debilitating relapse could strike at any moment.

One month passed post-surgery and I was feeling OK. A little tired, but OK. Then a second month passed with no treatment. Now, unbeknownst to me, I started to forget simple tasks around the home and office. A third month passed and I was dragging my left leg, had blurry vision in my right eye and couldn’t follow simple instructions. However, due to the brain fog I was in, I convinced myself that nothing was wrong.

That’s when my neurologist stepped in. I didn’t tell him anything, but you see I worked for a neuroscience clinic that was associated with his practice. One of the nurses called him and he made a special trip down to the neuroscience clinic to check on me at work one day. As a result of his visit, I found myself in an MRI followed by the news that my brain and spine were blossoming with active lesions. He ordered me a round of solu-medrol and a follow up with him the next week.

During that follow up, he wanted to know why I was acting the way I was. Why was I going against medical advice? I told him I was done fighting and that I had already been through too much. He spent the rest of the appointment helping me decide that I was worth fighting for. That my multiple sclerosis would have periods of relapse followed by periods of remission and that I needed to use the available tools to fight it with all I could. And I did.

Good Times: Last week, I walked into his office feeling like Norm on Cheers. I got to visit with old coworkers and acquaintances and catch up with old friends. Then, it was time for the appointment and this appointment felt a little different. He did his protocol tests and talked to me about lab results from a recent blood draw. Then he took the conversation in a different direction.

“Matt,” he said, “How are your travels? I worry some time that your life on the road is going to wear you down.”

“You know me,” I responded. “I want to use my story to go make a difference in the world.”

“When I think back to when I first saw you, to where you have come, despite the challenges.” He paused. “I’m just…I’m proud of you.”

Given where we have been and reflecting back on the past five years together, the good and the bad, I was speechless. This is a revered neurologist, that has been practicing MS in Phoenix since 1978 and he is proud of me.

At first, I was speechless then I responded, “Remember when you told me I was worth fighting for? Well, I believed you.”

I believe that all of you who are reading this are also worth fighting for. The question is, do you believe it too?

*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/

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