Policy, information technology  

New alliance to help MS sufferers make the best use of technology

29 March 2007

New York, USA. The MS Technology Collaborative is an alliance of leaders from three specialty areas — pharmaceutical, technology, and patient advocacy — to improve the way technology may help people with MS maintain their health and independence, have support for their life choices, and stay connected with their families, friends, and communities.

The MS Technology Collaborative consists of Berlex, Inc., a US affiliate of Bayer Schering Pharma AG, Germany; Microsoft Corp; and the National Multiple Sclerosis Society. A project steering committee comprised of people with MS from across the country will oversee these efforts to help ensure that the outcomes from the project truly address the unmet needs of the MS Community.

MS is an unpredictable neurological disease that affects an estimated 400,000 people in the United States. A new case is diagnosed every hour. Often, MS is diagnosed in people between the ages of 20 to 50. It can cause vision problems, tingling or numbness, trouble maintaining balance, fatigue or weakness, loss of coordination, problems with walking, or lapses in memory.

These problems might be permanent, or they might come and go without warning. While there is no cure for MS, early and effective treatment is an important component of helping to control its progression. One goal of the MS Technology Collaborative is to explore the ways in which effective treatment and the use of accessible technology can together enhance the lives of people with MS.

For some people with multiple sclerosis (MS), technological advances may offer benefits, but they can also pose challenges. Due to some MS symptoms, everyday tasks such as seeing a blinking cursor on a computer screen, manipulating a mouse, or remembering when to take medication may prove difficult. Industry leaders think they may be able to change this.

As a first step, the MS Technology Collaborative will conduct a survey of people with MS to understand how they use technology throughout their disease and in their professional and personal lives. By fully understanding how people with MS use technology, the MS Technology Collaborative aims to create a personalized, interactive, Web-based program that will deliver tailored information to each individual with MS. The survey will also explore how MS symptoms may have affected major decisions in their life.

Another goal of the MS Technology Collaborative is to raise awareness of how existing technology can help fulfill personal and professional goals, showcasing how technology can flex to the changing needs of each person with MS. Altering screen settings on computers, using a trackball instead of a mouse, sending text messages to remind one when to take medication — all may help a person with MS navigate daily challenges.

Because MS is a highly variable and unpredictable disease and each person may experience a number of symptoms with varying degrees of severity and/or frequency, the MS Technology Collaborative will try to meet individualized needs by offering a robust, online portal of existing resources and information, including basic tips for selecting appropriate technology. For those not experiencing any symptoms related to their MS, the knowledge that there is a comprehensive resource with tips, testimonials and additional insights available to them may help mitigate their fears of what the future may hold.

"Having MS means something different to each person with the disease, so we are especially excited to identify new and customizable solutions to help expand and simplify how people with MS stay connected to those around them," said Joyce Nelson, President and CEO, National MS Society. "We want to help people with MS connect and move forward in the world in ways that support their individual needs — not the other way around."

"At Microsoft, we are dedicated to creating technology that adjusts to individuals' needs as they change over the course of a day, a year, a lifespan — including those with MS or any other type of condition," said Rob Sinclair, director of the Accessible Technology Group at Microsoft. "We believe that technology will help people with MS maximize their abilities, even as those abilities change."

"Multiple sclerosis and its impact on people's lives needs to be fought on multiple fronts through effective treatment, comprehensive support systems, and practical technology tools," said Dr. Ludger Heeck, vice president and general manager of Specialized Therapeutics at Berlex. "Berlex was the pioneer in providing effective drug therapy and comprehensive support programs to people with MS, which allows us to bring a deep and specialized understanding of MS to this project. By combining the strengths of each Collaborative member with the personalized perspective offered by the steering committee, we believe this unique approach will have a strong, positive impact for people living with MS."

About the MS Technology Collaborative

The MS Technology Collaborative's vision is to provide people with MS information resources and tools to create a connection between technology, community, and treatment options so they can stay connected to the world.

In addition to conducting a survey; creating a personalized, interactive, Web-based program; and developing an online resource of relevant MS information; the MS Technology Collaborative will issue a comprehensive report based on the survey results, with a focus on the role technology and connectivity plays in the lives of people with MS. The report will be widely distributed by all members of the MS Technology Collaborative and will be available on the group's Web site at http://www.mymsmyway.com/

Individuals interested in participating in this landmark survey or those wanting periodic program updates can register for additional information at http://www.mymsmyway.com/

To top

To top