For people newly diagnosed with multiple sclerosis (MS), learning about the disease can be frightening. Patients are often overwhelmed by information, some of which they’d rather not know. And making comparisons doesn’t help; one person may have vision problems while another can’t walk.
Because everyone experiences MS differently, the newly diagnosed wonder, “what will happen to me?”
A nonprofit organization called SoftServe Matters is on a mission to guide the newly diagnosed through their MS journey in a tailored way. The platform, MS SoftServe, is set to launch by the end of this year.
The Concept of SoftServe
“Because I was diagnosed in 1988 at 20 years old, my entire adult life has been shaped around this nutty disease,” explained Amy Gurowitz, founder of MS SoftServe, in an interview with Healthline.
In 1988, the founders of Google were just teenage boys. So the process of learning about MS involved cracking open a book—one she immediately slammed shut after reading words like “progressive” and “degenerative.”
“I decided to opt out of learning,” she said, “since no one knew what my version of the disease would include.” But while working on her master’s degree in educational technology at New York University, the idea for MS SoftServe took hold. It became the subject of her thesis, and has been her passion ever since.
"What works and what doesn’t when trying to learn about MS on the Internet is like a moving target," wrote Gurowitz in an essay for Real World Health Care. "What a person needs to know changes as the disease progresses over time. And while anxiety is common for the newly diagnosed, even people who have been living with MS for many years go through changes in both the everyday symptoms and the course of the disease."
Gurowitz, who lives in New Jersey, said the concept for MS SoftServe is simple: “Give the end user control over how information is presented to them.” For example, if you’ve never had optic neuritis, but bladder issues are important, you can narrow your study to bladder symptoms so irrelevant topics won’t distract you.
A Designer Learning Experience
Some people are comfortable reading scientific papers, while others prefer layman’s terms. Some absorb things better through reading, while others prefer watching videos. MS SoftServe will adjust to fit the user’s needs. By selecting a preferred language level and media type, users can create a unique learning environment.
More importantly, MS SoftServe will give patients a way to educate family and friends about their version of the disease.
“MS SoftServe will...allow you to easily teach others about your experience,” Gurowitz said. “You’ll be able to create MP3 recordings, download PDF files, and share links that explain how your MS affects you, helping others understand what you’re going through.”
“The big thing is the custom URL,” Gurowitz added, “describing your version of MS that you can use as a quick mechanism to help people learn about your experience.” As you select topics of interest, your preferences are saved “almost like a shopping basket,” she explained. With one click, friends and family have access to everything you choose to share.
Raising Awareness and Funding
Gurowitz and the MS SoftServe Board of Directors—a veritable “Who’s Who” of MS researchers and advocates—are focused on raising awareness about the organization. “I don’t want anyone to ever go through what I had to when I was first diagnosed,” Gurowitz said.
As for fundraising, “We’ve raised over $15,000 to date,” she said, “including donations from individuals, corporations, foundations, and a startup grant of $3,000 from the National MS Society, which is the first grant they’ve given–they are in the business of getting grants.”
Though the list of donors is growing, there is still much work to be done. Producing videos, adding content, and building the “scaffolding” that will become the user experience takes time and money.
Gurowitz’s attitude remains upbeat and positive. She’s confident that her dream of a unique and useful MS learning platform will soon be a reality.