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.

Introducing My MSAA Community for People Affected by Multiple Sclerosis

My MSAA Community (1)MSAA is excited to announce that, in partnership with HealthUnlocked, we have launched a new peer-to-peer online community called My MSAA Community! This free online forum is a safe place for anyone who has been affected by MS, whether they have been diagnosed or are a care partner, to share their stories and find information and support.

Sometimes when you are going through something personal and you try to share your feelings or your experience with someone who hasn’t been through the same thing, you can find yourself hitting an emotional wall.  The person you share your feelings with may be able to empathize and understand what you are sharing to a certain extent, but they may not fully appreciate what you are going through, since they haven’t experienced it themselves.  In these situations you can feel like you need to talk to someone who “gets it” and has been through what you are going through.

My MSAA Community is designed as an online community and forum for people whose lives have been affected by multiple sclerosis to find each other and share their experiences as a way of providing support and information.  This community allows members to post questions and get answers from others on the forum and contribute to other ongoing conversations.

Follow or join the community at: https://healthunlocked.com/mymsaa

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Embracing Change

By Stacie Prada

In the last three years so much of my life has changed.

My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

  • Uncertainty for what the next step was or how to decide
  • Being afraid that following that step would lead to an outcome I feared
  • Being overwhelmed from the quantity of things to deal with at that moment
  • Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
  • Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change:

With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:

  1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
  2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
  3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
  4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
  5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
  6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
  7. Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
  8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
  9. Set realistic expectations and ambitious dreams.
  10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
  11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
  12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

*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/ 

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Annual AAN and CMSC Meeting Highlights

Every year, the American Academy of Neurology (AAN) and the Consortium of Multiple Sclerosis Centers (CMSC) hold meetings to present on topics of interest to the multiple sclerosis community.  This year, the annual AAN meeting was held in Vancouver, Canada in April and the CMSC meeting took place in Maryland at the beginning of June.

After each meeting, MSAA condenses all of the information presented at these meetings, which is meant for medical professionals, to easy-to-read articles to keep you informed about what is new in the world of multiple sclerosis.

Both meetings this year covered a range of topics, but here are a few items highlighted in MSAA’s annual review of these meetings:

  • Updates on a sampling of approved and experimental treatments
  • Trial results for new symptom-management treatments and programs
  • Interesting studies on pediatric MS, risk of MS, and children of parents with MS
  • Various other topics, such as gut immunity, the effects of poor sleep, and gaps in public awareness about MS

Read the full article on MSAA’s Latest News section to see more topics presented at this year’s meetings!

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Summer Love

By Lauren Kovacs

Summer is a double edged sword for many with MS.  Making the monster happy is a battle.  While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight.   Staying cool is essential.  Cooling vests with the ice packs work well.  I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative.  Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible.  I know having kids home for the summer is like herding drunken cats.  As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle.  Pick an activity indoors, like bowling.  It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy.  It cuts me down with one swoop and then stabs me to be sure I stay down.  Coffee and soda are the poison of choice for many.  But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder.  The caffeine crash is another unsavory blow.

I have found timing is everything.  Time medication and naps to your daily needs.  My secret weapon is caffeine gum.  Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty.  Using the potty, for me, has its own gymnastic routine.  It also means using precious energy.  I feel like a gnat in winter already.  I cannot afford to use energy on potty breaks.

Take summer slow.  Summer days drift away so fast, but enjoy it too.  MSers are great at balancing.  Enjoy what you can, when you can and however you can.  Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

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5 Reasons to Give Swimming a Try

Aquatics PhotoNow that summer is in full swing, are you looking for alternative ways to stay cool while getting in some exercise? Head to the pool! Swimming and other water-based exercise can help with many symptoms of MS, including loss of mobility, balance and coordination, as well as fatigue. And the cool temperature of water can help prevent overheating, which can worsen MS symptoms.

Even if you’re not confident in your swimming abilities or you just don’t like dunking your head underwater, there are plenty of other ways to exercise in the pool.  Many fitness centers and area municipal pools offer aquatic classes including water aerobics, walking, and aquatic treadmill.

Swimming is an aerobic activity, so it’s good for your heart and your muscles. Here are more reasons why you should consider giving swimming a try:

  1. Buoyancy: Water supports 90% of a person’s body weight, reducing joint stress, pain, and fear of falling
  2. Resistance: Water-based exercise builds muscle and enhances stability, flexibility, and balance
  3. Pressure: Swimming allows the heart to work with less stress, reducing swelling and pain in lower extremities
  4. Temperature: Water transfers heat energy more efficiently than air, which can help moderate body temperature
  5. Overall Wellness: Socializing at the pool, having fun, and relating to other individuals can have psychological benefits.

Find more tips, resources, and inspiration to get started on MSAA’s Swim for MS Online Aquatic Center at aquatics.mymsaa.org and check out our Aquatic Exercise and MS – Tip Sheet.

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Introducing Susan Russo – Artist & MS Conversations Newest Guest Blogger

By Susan Russo

My name is Susan Russo and I was diagnosed with Relapsing Remitting Multiple Sclerosis back in 2001. I live just outside of Houston, Texas in the town of Pearland. I recall when I first moved here, the local folks said there are three seasons in Texas – Summer, July, and August! And there’s never been a truer statement made. Living in the Texas heat is a challenge for anyone, but when you have multiple sclerosis, a “typical, fun in the sun summer” simply does not exist, as least in my world.

Growing up in Northeast Ohio, my summers consisted of camping in the backyard, catching fireflies, and playing blind-man’s-bluff until midnight. How I remember, the endless days spent swimming in the local pool while munching on frozen Zero candy bars and chasing all the cute boys.

In Texas, my summers are spent primarily indoors, but that is not necessarily a bad thing.

I love my solitude. But I also appreciate being around people and staying active. I schedule my grocery shopping for later in the day, towards dusk, because carrying a few bags from my car to my front door in 100 degree heat can make me feel like I’m going home to Jesus at any moment! Thank you Lord for air conditioning.

I also love to swim. The Pearland Natatorium has an incredible indoor lap pool. My favorite days are when the Houston Texans football team show up for their Spring Training workout schedule. Best day ever! Nothing like beautiful eye candy to keep you motivated! Yup, I still chase cute guys.

Here’s the thing about multiple sclerosis. Just because it’s summer, doesn’t mean you cannot have fun, indoors or out. It took me a long time to understand this simple concept. You just have to choose what is right and most comfortable for you. Work “with” your disease. Not “against” it. Make sense?

Here is what I finally realized:

  • My favorite, year-round footwear are flip flops with glitter
  • I am addicted to binge watching on Netflix, for real, people. ( I think I may need therapy)
  • My Thursdays are spent watching the Blue Bloods marathon
  • I can have all the popsicles and vanilla ice cream cones I want (with sprinkles on top), without it dripping down my shirt and pooling into a huge glob of melted goop, before I even take my first bite
  • I can volunteer for my local community or sign up for interesting summer courses
  • I can see a movie at the local theater with absolutely no crowds, long lines, or someone’s big hair style up-do blocking my view.
  • Did I mention, I can eat all the popsicles I want?

And of course, there is always my precious art. For those who know me, and for those who do not, I am an artist. My creativity is my saving grace, especially during the mundane summer months along the Texas Gulf Coast.

Summer is going to arrive, every year; hot, super hot, or indifferent. That’s a given. But do not despair my fellow MS warriors. The days sprawled outside in my lawn chair, sipping iced tea with lime, under the glorious blue skies and feeling the semi-brown prickly grass under my feet, (along with the mounds of fire ants) are not gone forever.

When autumn and winter arrive in Houston, that is when my true “All Things Summer Event” begins. Just imagine 70 degree days, bright amazing sunshine and no humidity along with crisp, cool breezes that lasts for days and sometimes even weeks. Yes, even weeks.

Oh…and sometimes it even snows. Yup, it snows. My “favorite” time of year, besides summer, of course.

"Seasons of Summer" by Susan Russo

“Seasons of Summer” by Susan Russo

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Why Did I Wait So Long? Considering Advice, Rethinking Success, and Setting Small Goals

By Stacie Prada

Sometimes it seems that advice for better health sounds like we need to do more, be better, and just generally suck it up buttercup.  I’m not impressed by stories of people saying, “If I can do it, anyone can do it.”  It completely ignores the fact that the other person had a challenge and may not have been able to do it at a different phase of their life.  It also may be something that they won’t be able to maintain for the rest of their lives. It basically ignores the individual circumstances of our own physical health, lifestyle and obligations.  We all have different demands and limitations, and we should only compare ourselves to where we are now and where we want to be given our interests and preferences. That said, other people’s stories often inspire and motivate me to take the next step on something I’d like to accomplish.

After my MS diagnosis, I read the suggestions to swim and do yoga.  I realized that I was very reluctant to do yoga, but I didn’t have a specific reason. I’d tried yoga videos, but they didn’t hook me. Later I realized that my reticence was likely because it seemed like it would be admitting that I was giving up on doing gymnastics. It seemed like accepting defeat. Once I went to a yoga class years later, I loved it so much I couldn’t believe I’d waited so long to try it! To be fair, I was busy. I was active doing other things. Life was full and doing yoga seemed like another thing I “should” do instead of something that I would enjoy.

More recently I started swimming, and it took me a while between knowing it was a good idea and actually going to the pool.  My reluctance to swim was more based on proximity, convenience and feeling slightly intimidated about all of the associated unknowns.  While talking with a friend about swimming, I shared that I was starting to think about my exercise schedule as a two week or monthly schedule instead of weekly.  With this approach, I could aim for doing certain activities once every two weeks or once a month.  That goal made it suddenly desirable and motivating for both of us to go to the pool.  By reducing the idea of success, it removed the barrier of over-committing or setting myself up for feeling like I’d failed if I didn’t continue. Once we got to the pool and swam a few laps, we were a bit giddy about how good we felt, what an excellent workout it was, and how well we each slept that night. Again, why did I wait so long to start swimming?

I’m not going to dwell on the past, but I do want to learn from these experiences. If something interests me, next time it might be good to think about the following:

  1. Can I try it once without committing to a regular schedule?  It’s not all or nothing, and it won’t be failure if I decide not to continue.
  2. Do I know someone who does it and will give tips about what to expect? This can help reduce feelings of intimidation or nervousness about new surroundings, people or experiences.
  3. Did I used to do it and enjoy it? If so, why wouldn’t I now?
  4. Do I have a friend willing to go with me? This makes for great bonding and mutual encouragement for healthy habits.
  5. Do I need special clothing or equipment? Try goodwill or other second hand shops for inexpensive gear so that I’m not out much money if I decide not to continue it.

MSAA advises people with MS to consider swimming and yoga for good reasons. They’re easily adaptable to different skill levels and physical abilities. They both are a bit meditative for me, and I’m relaxed even after intense workouts. They work lots of little muscles in my body in a gentle yet strengthening way. Plus, I always sleep better on days I’ve done them. I love when I incorporate good habits into maintaining my health even when it takes me a while. I hope to be able to keep yoga and swimming as part of my ongoing activities even if they’re only a few times a month. That’s still success.

swim blog

*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/ 

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Stories to Inspire

11-Year-Old Walker Reynolds Swims for His Mom and Others with MS

Shana Walker

Shana Stern and Walker Reynolds

“I have a child who has had to see his mother in pain, stuck in bed, on medications – because of my MS,” explains Shana Stern of Austin, Texas. “And because of this, my child is incredibly empathetic and compassionate.”

Shana, who was diagnosed with MS in 1999 and recently featured in MSAA’s Art Showcase, is proudly referring to her 11-year-old son Walker Reynolds who embarked on a remarkable and inspiring quest this summer. Walker is using his love of swimming to help raise money to improve the lives of those living with multiple sclerosis (MS).

By participating in MSAA’s Swim for MS fundraiser, Walker has set an ambitious goal of swimming one minute for every dollar donated this summer up to $1,600. Plus, at the end of the summer on his 12th birthday, he will do a cannonball for every dollar donated over his goal.

Serving as MSAA’s national signature fundraiser, Swim for MS encourages participants to set a swimming-related challenge, such as swimming laps over a set time or distance while recruiting friends and family to donate to MSAA in support of their goals. Swim for MS is any pool, any time – how volunteers choose to participate is completely up to them.

“I think Swim for MS is a cool way for kids to be world participants – and actually begin    to make a difference in the world and to the lives of many people,” Walker says of the fundraiser. “When I saw that for $600 I raise, a person with MS who can’t afford a wheelchair could be given one. That really motivated me.”

In addition to swimming, Walker loves art, like his mother, and enjoyed seeing her painting in MSAA’s Art Showcase. “When my mon’s vision got to too bad for her to keep writing, she began to paint. And because she kept dropping brushes, she created her own method of painting, using only her fingers. People in Austin really liked what she does and started buying her pieces. Her painting and art is what keeps her going on bad    days because she can just lose herself in the paints and colors. It was great to see it on your website!”

While Walker continues to hit the water and swim his daily laps, Shana has been actively promoting his amazing Swim for MS challenge to family, friends, and the general   community through emails and social media posts. As one could imagine, Shana’s admiration for her son is immeasurable.

“I am so extremely proud of Walker for trying to do something to help others in the world, especially at his age.  I’m grateful to him for constantly being my inspiration to fight through whatever difficulties I face that day. He gives me reason to keep living.”

MSAA certainly echoes these wonderful and well deserving praises of Walker and his dedication and compassion to help others in need. We greatly appreciate his efforts and encourage anyone interested in helping Walker meet or exceed his goal to please visit his Swim page at: http://support.mymsaa.org/goto/WalkerReynolds .

Stories to Inspire is a regular feature in My MSAA Today, our bi-monthly eNewsletter. Sign up to receive email updates from MSAA to have the newsletter delivered right to your inbox!

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How the My MS Manager App Helps Manage MS

In 2014, MSAA partnered with app developers @Point of Care to update the My MS Manager mobile app – making it a much better tool to not only help you manage day-to-day life with MS but to also help facilitate shared decision making between you and your doctor.

More than 7,000 people affected by multiple sclerosis currently use the app to record and track their specific MS disease-related information, such as daily activities, fatigue scale records, medications, and other relevant information.  The app organizes this data into useful charts and reports that can easily be shared with your doctor and healthcare team.

Earlier this year, @Point of Care and MSAA surveyed users of the app to see how they were using it and if it was effective in helping manage their MS. This data was presented earlier this month at the 2016 Consortium of Multiple Sclerosis Center (CMSC).

Results from the survey of more than 1,300 active monthly users showed:Capture

  • 77% utilize the app daily or weekly
  • 80% state the app helps them track how well they are doing
  • 78% reported that regular use of the app improved their ability to discus and manage their MS
  • 70% have a sense of improved well-being as a result of using the app
  • 75% reported better management of their fatigue by using the app
  • 73% discuss and share their app records with their doctor to improve MS management
  • 86% reported they are motivated to discuss management of their MS with their doctors as a result of using the app

For more information and to download the My MS Manager app for free, please visit mymsaa.org/mobile.

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Staying Connected, Staying Sane: Social Media & MS

By Jeri Burtchell

I’ve never been very outgoing. In my younger days, I was the one off in the corner at the party quietly taking it all in. Casual conversation terrified me.

So it should come as no surprise that, in real life, I only have a handful of friends and most of them are relatives. But when I was diagnosed with MS in 1999, my microscopic social world seemed to get even smaller. I’d never really taken into account that George, who faithfully bags my groceries, or Shirley, who has cut my hair for years, were friends, too.

During my first MS attack my legs became weak and totally numb. I was suddenly unable to drive. My car – and the mundane socialization of everyday interactions – came to a complete standstill. That’s when I realized how much I depended on the Georges and Shirleys of the world to keep me connected.

When I was first diagnosed, I was trying to care for my infant son while grappling with symptoms that made every diaper change seem like an Olympic event. The combination of raging MS and motherhood left me physically and emotionally exhausted. I kept that to myself most of the time, not wanting to burden my family and friends for fear of driving them away. I didn’t realize at the time just how toxic fear and loneliness can be.

It wasn’t until I got a computer and the blazing speed of dial up internet that my world opened up. The gray clouds had parted and the rays of friendship – or at least camaraderie – were beaming in. I found people online I could relate to. Others with MS who understood exactly what I was going through both physically and mentally because of this disease. I had only ever met one person with my condition prior to passing through this portal to a whole new world.

That was back when online forums and chat rooms were about as social as it got. But I learned a lot about my disease from the internet, and even more about symptom management and treatment options from others like myself. People in search of friendship and a way out of the isolation that chronic illness so often imposes on people.

Then came Facebook and Twitter, two platforms that have exploded in popularity, giving us access to the world and each other in real time. Empowering people living with chronic illness to find each other and share information, experiences, and photos of our cats. Facebook groups are where I go to learn the latest news of cutting-edge science in MS. Hashtags on Twitter give me an easy way to join conversations about health activism or to follow my passion – raising awareness about the importance of clinical trials.

It was through one hashtag, #whyclinicaltrialsmatter, that I met my new friend Janelle, who lives in Australia. Despite a 14 hour time difference, we Skype on Sundays now, brainstorming how together we might make an impact on the world.

If MS is the worst thing that has happened to me, the internet and social media have been among the best. My computer has enabled me to travel the world from my living room, learning, growing, and making new friends. Social media was the conduit, turning me from a frightened and lonely introvert into a health activist championing for change. I’m not saying that’s how it would – or should – work for everyone. Social media is a tool. With it, you can build whatever connections you like that fulfill you and add to your happiness and wellbeing.

I may not be close to everyone I know through Facebook or Twitter, but they all bring value to my life. They enrich me, they educate me, and they shine light into dark places when I begin to feel like my world is closing in. So while my small circle of family and friends in real life are my go-to connections, I appreciate what the Georges and Shirleys of this world mean to my social health. And I cherish my online friends who are never out of reach. They’re always just an app away.

*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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