Team MSAA and runDisney Participant Highlight: Ashlei Brown

Posted on September 9, 2024 by Dana Carney

Four years ago, Ashlei Brown ran her first endurance event as part of Team MSAA. The view was about as good as it could get – EPCOT.

In July, Ashlei shared her struggles with a severe MS flare that she experienced in 2020.

“2020 I was in the biggest episode of my life, hardly able to walk. I was stressed about moving my family across state lines from Florida to Tennessee into unfamiliar territory with no extended family to lean on… in the middle of COVID. My MS is completely under control now, thanks to the amazing people at @VUMChealth.

I think it’s time to run again for @MSassociation”

We wanted to hear more about Ashlei’s journey with Team MSAA, and what inspired her to run again at Disney.

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Team MSAA and runDisney Participant Highlight: Tiffany McCahill

Posted on August 15, 2024 by Dana Carney

Completing a 10k endurance event last year wasn’t enough for Team MSAA participant Tiffany McCahill. She’s doing it again, but this time raising the bar and taking on the half marathon!

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An Ode To Mothers

Posted on June 13, 2022 by Teena Palathanam

A picture does indeed speak a thousand words. This artwork by Mary Jane Q. Cross is a powerful depiction of the relationship shared by an aging mother and her daughter. It portrays the content smile on the mother’s face and the daughter’s gentle embrace but what is more evident is a bond that is built on friendship and trust. Like old wine, this foundation between mothers and daughters gets stronger and the hearts grow fonder as the years pass by.

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Stories to Inspire

Posted on February 28, 2017 by MSAA

Since 2013, Shana Stern has actively participated in MSAA’s Art Showcase campaign, where people living with multiple sclerosis (MS) submit images of their talented artwork for display on our website gallery, promotional materials, and social media platforms. Shana’s bold and vibrant paintings reflect not just her artistry, but also her willingness to rise above the ongoing challenges of multiple sclerosis. Diagnosed with MS in 1999, Shana battles a variety of symptoms including extreme fatigue, pain, drop foot, and visual difficulties. In addition, Shana also has a loss of feeling in her right arm and fingers, which limits her ability to hold or grasp any small object – including a paint brush.

Frustrated by constantly dropping the brush and her inability to control the path of the paint, Shana was forced to once again work around the impact of MS and find a solution. While sitting on the floor, Shana discovered that she could balance the canvas on her knees and paint with her fingers and knuckles. By adapting to this new and unique style, Shana has regained control of her artistic abilities and found an even deeper connection to her love of painting. “Getting lost in the music I paint to and helping the colors dance across the canvas with my fingers has become my mental, spiritual, and emotional therapy,” said Shana. “We may get knocked down a bit and have to work a little harder, but we are capable of great things such as bringing beauty and art into the world! Yes, I have MS, but I am an artist.”

Not surprisingly, Shana’s son Walker Reynolds, 12, also shares a love for art and the ability to reach beyond the ordinary to accomplish the extraordinary. Inspired by his mother’s spirit and determination, Walker also wanted to get involved with MSAA and help make a difference. While on the MSAA website, Walker discovered our Swim for MS fundraising campaign, where volunteers can create their own swim activity, set a challenge goal, and collect pledges from family and friends to help support the organization’s programs and services.

As a self-described “fish,” Walker’s love of swimming and the ability to raise funds while having fun in the pool made for a perfect match. Despite being 11 years old at the time and having no prior fundraising experience, Walker dove right in and registered for Swim for MS. Starting in June 2016, Walker dedicated his summer to swimming one minute for each dollar donated, with the ambitious goal of raising $1,600. On his fundraising page, Walker stated: “My goal is to raise $1,600, which is $100 for each year my mom has struggled with MS. Daily she battles fatigue, numbness, pain and vision loss (which stinks when I need homework help!). Because her symptoms are ‘invisible’ I want to educate others and also inspire others like she inspires me!”

With Shana and Walker’s permission, MSAA began promoting their remarkable story to the local media and within the MSAA community. By summer’s end, with the support of their family, friends, and other contributors, Walker not only reached, but exceeded his goal and raised more than $1,800 to help support the MS community. As one can imagine, MSAA is extremely proud to recognize the amazing love and inspiration of Shana Stern and Walker Reynolds by honoring them at this year’s Improving Lives Benefit.

Stories to Inspire

Posted on September 1, 2016 by MSAA

Find Out What “Moves” Joe Revello

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”

Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.

But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.

“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”

Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”

Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.

“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”

Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.

“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”

“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”

Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.

To learn more about this product, please visit http://www.thealinker.com/.

A ‘Thank You’ to the woman who inspired me

Posted on March 8, 2013 by Shawn

My grandmother frequently told me this story about my mom. When my mom was born she was born “in the surron” (enveloped in a protective film). Among the country people of Puerto Rico this was a very auspicious occasion because it meant that the child would grow up to be highly intelligent. Many years later this same endearing grandmother would tell me that our Labrador retriever, Kada, was highly intelligent because he was born with a protrusion emanating from the top of his head. How this one came about, I’m not quite sure.

I wasn’t born in the surron, or with a lump on my skull. As a matter of fact, the only bumps I could remember were the cocotazos (lumps) I used to get, from the nuns in Puerto Rico, when that glassy look would change my countenance as my daydreams infiltrated their lessons. Or, when my brother, Brandon, inspired by Saturday Night Live, would hold me in a head lock and impart some Pizza Man (Bill Murray ), nookies upon me.

Unlike my Mom, I was somewhat shy and awkward as a child and had to fight for any kind of scholastic success. Even as an athlete, my mom was told that I had 2 left feet and would never be much of a runner. I always felt that I had to work harder, in everything, to reach any sort of proficiency.

Upon being diagnosed with MS I felt like that child being dealt yet another blow. A deluge of emotions overwhelmed me as I tried to understand the implications of the disease and how it would impact my life. How much more could I endure? I had lost my grandmother, gone through a bad divorce and survived a horrific car crash. Just when I thought my life was changing, I was engaged and within three weeks of getting married again, life had dealt me yet another blow.

Depression and sorrow was not what I had expected my new marriage to be full of. The disease, in addition to medications that made me even more depressed, had paralyzed me into a lethargic, self-pitying coma. I became a dragon in my lair; a recluse who did not want to engage in any social activities that would remind me of the pre MS life that I yearned. The passion that I once held for art, reading, and running were ghost like remnants.

After long months of bereavement I finally understood that I could NOT let MS ruin my life. So with my final acceptance I placed a caveat: I would not let MS beat me.

I meditated, started running and writing again. I continued my book about my experiences with MS called “Rising with Dignity” (copyrighted). I also decided, with my husband, to hike 817 miles across the state of Arizona to raise awareness of MS. Yet, more importantly I wanted to help others find the strength and courage, inherently possessed, to overcome our fight against MS.

I was starting to become whole again, confident and courageous in my fight against MS . I still had MS but I would stay grounded and not let its talons swoop me away. I would become that scrappy child again, fighting for what I believed was just – my right to a meaningful life.

And so even though my grandmother gave birth to a child in the surron it was she [my grandmother] who bequeathed each one of us with intelligence, courage and love. I thank her for the woman I have become.

Getting Started

Posted on September 14, 2012 by Shawn

My husband Bob and I started planning the “Big Hike” over a year ago, and while there were many starts and stops we are finally on our way. We spent many months planning the logistics of the hike, securing funds and training. There are so many things to think about. I know that my family has finally accepted my decision. They were concerned about my hiking solo, which not something I would have done, as I know my limitations. Then, there were concerns on being out in the “wild” for such a long period of time (at least two months). My mom, especially, didn’t realize that wild to me is being back on the streets of New York City. I do love New York but I am so accustomed to being out west that NY was analogous to “wild” for me.

My family has always been behind me, in spite of my seemingly strange adventures. Moving to Costa Rica; to Italy; studying art; becoming a banker; and a plethora of diverse changes I’ve made throughout my life.

We had a deadline for funding of August 21, 2012. About a week before the deadline I received an email from Liz Mares. She was hiking the Arizona Trail, solo, in September. I immediately reached out to her and asked if she would consider hiking with another hiker.

It turned out that we had a lot in common and our hiking pace was symmetry. Liz is an RN and also an artist. She’s from Ohio, where Bob is from and lives in Arizona now. She had Lymes Disease, and is sometimes affected, and I have MS.

Our fundraising efforts had been slow but gently it was trickling in enough to start us out, with the hopes of donations during out hike (insert link to donation page). To make sure we were able to start the journey, we dug into our own pockets the initial amount needed to begin. While Liz and I will be on the trail, my husband Bob, will be providing support by following us in a supply vehicle and posting up dates on our progress. I am also excited that my dad, of 73 years, will be joining us for three weeks! We’ve also been offered help from Trail Stewards, friends, family, and other avid hikers. And, my mom’s efforts will be in helping us fundraise, and moral support.

With so many blessings and the support of my loving and also patient husband we can now embark on this journey. Our first day on the trail was September 11. I will do my best to provide updates through my blog (Hiking for Multiple Sclerosis) and this one provided by MSAA. I hope that you will find my story inspiring and please feel free to comment or leave words of encouragement! I will do my best to respond when I can.

The “Big Hike”

Posted on September 12, 2012 by Shawn

The idea of the “Big Hike” was mainly conceived to motivate others with MS and bring public awareness to the numerous individuals who are living with MS today. The “Big Hike” is 817 miles through the Arizona Trail, across the entire state from the border of Utah with Arizona to the border of Mexico. We are also hoping to raise $10,000 in support of the programs and services MSAA provides to the MS community.

I am very excited, nervous and passionate about this hike. I have never done anything that is so important and personal. It will be a long journey through some desolate and rugged terrain during some of the hottest times of the year. This is an area inhabited by snakes, mountain lions and bears to name a few. And hopefully, we will not have any experiences with any of these wonderful creatures.

Hiking is something that I love to do, and for me, an effective way of getting our message of hope to the 400,000 people in the United States that have MS.

We are all unique in our passions, hopes and aspirations. My “Big Hike” is meant to inspire courage and resiliency in others. Sometimes that means redirecting our goals to support our potential. To me, this journey I am taking is just as brave and honorable.

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