Stories to Inspire Archives - MS ConversationsMS Conversations

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.

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/.

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