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.
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
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
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
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
Individuals interested in participating in this landmark survey or those
wanting periodic program updates can register for additional information at