Toward an accessible Minnesota with a heightened quality of life for all. A lofty vision, but not an impossible challenge for the people of the Minnesota Multiple Sclerosis Society.
The Minnesota MS Society recognizes accessibility as a common foundation shared by all persons. Therefore, they have moved beyond just awareness and become more involved in advocating physical accessibility. Access Minnesota, a special project of the MS Society, was created in 1989 to address this critical issue. With the successful passing of the Americans with Disabilities Act (ADA) a year ago, the MS Society continued championing the rights of the physically disabled in favor of full access in all areas of life, not just additional curb cuts and cosmetic improvements. Because barrier-free architecture, more than anything, unifies the community serving as a constant and visible reminder, their efforts are focused in that arena.
The MS Society has continued to increase its advocacy efforts by assuming a more active role at the state and federal level. They joined in the push for universal health coverage by leading a coalition of disability organizations supporting the Health Care Access bill (passed, although ultimately vetoed by Gov. Carlson).
“Health insurance reform will remain a top priority for the MS Society,” promises Tom Zosel, Advocacy Program Coordinator, “and we hope to be a strong example to other voluntary health organizations that change can be won.”
MS Society staffers feel that too often we have seen persons with disabilities portrayed as “different” and segregated from the community. Rather than perpetuate this disability “mystique” and focus on differences of the disabled, the MS Society chooses to promote an inclusive community built around the concept of accessibility.
As the recent events surrounding the Metro Mobility funding have indicated, the MS Society “remains committed to maintaining the most reliable, affordable accessible public transit system in the country,” explains Zosel.
As part of an ambitious campaign to heighten public awareness of accessible transit, MS Society members participated in two successful transit rallies at the Capitol this year, and continue fighting against higher fares and reduced services. Their long term goal is to turn this increased awareness into positive action by the 1992 Legislature.
This fall, the MS Society will launch ACTION ALERT, an advocacy consortium of MS members, advocates and volunteers who want a “hands on” involvement in government. ACTION ALERT will include instruction in every aspect of government, from coalition work to volunteer voter registration.
On a federal level, advocacy organizations have had little time to bask in the success of the ADA. The MS Society has been no exception. They have participated in the intensive process of developing federal rules and regulations relating to architectural access, public transportation and employment discrimination. All of these components will function as practical applications of the historic ADA.
Access Minnesota is making a difference. Here’s how:
– Sponsor of the Minnesota Access Achievement Awards which recognizes outstanding achievements in the area of barrier-free design.
– Sponsor of Minnesota State Fair Accessible Shuttle Service and Access Information Center providing everyone the opportunity to experience the fun of a great Minnesota tradition.
– Sponsor of “Excellence in Barrier-Free Design”, a competition for students and faculty at the College of Architecture, University of Minnesota, promoting greater know-how and solutions to accessibility in the architecture community.
– Sponsor of Community Access Partnerships, a project in collaboration with Minnesota’s Centers for Independent Living, working together to create greater accessibility throughout Minnesota.
HISTORY AND BACKGROUND
The National Multiple Sclerosis Society was founded in 1946 to find the cause, treatment and cure for multiple sclerosis. Since then, more than 140 chapters have been established throughout the U.S.
In 1957, the Minnesota chapter of the MS Society was established. Today, the agency is recognized nationally as a leader in funding scientific research into finding the answer to MS, and in providing innovative programs and services designed to help individuals successfully live with multiple sclerosis. Agency Director Will Munger attributes the organization’s success in its fundraising and service delivery areas to good business management principles and professional risk taking.
“Unfortunately, there are many people in the community who believe charitable non profit organizations should rely on bake sales and car washes rather than implementing sound management techniques raising money through events such as our bike tours and charitable gaming” says Munger. Munger feels strongly that non profit organization management needs to be patterned after corporate management to be successful. “We are professionals serving a community need,” he explains.
The charitable gaming tax levied on the MS Society dealt a severe blow. It is these gambling monies that enable the MS Society to fund the Access Minnesota program and continue the vision of advocacy. Although the MS Society has encountered problems with the gaming tax, coupled with a down turn in public response to charitable gaming during the current recession, Munger recognizes the need has not diminished. “We need cooperation so as to meet common needs and objectives. All organizations serving the needs of individuals with disabilities, for instance, can benefit from an advocacy program for disability issues.” Munger remarked.
“We need to work together on a united front”, says Munger, “and to utilize the best talents and resources of other disability agencies. A prime example of this joint success was the recent Metro Mobility rally protesting rate increases and service cutbacks”.
LOCAL FUNDING
The most controversial attitude surrounding fundraising is that the funds raised should remain in the community. The Minnesota MS Society seeks to meet the needs of individuals where services will be impacted the greatest. The demographics of multiple sclerosis do not always coincide with the geographics of its fundraising efforts. Therefore, in 1991 they began searching for the best means of satisfying local community needs while at the same time meeting their mission statement. This resulted in a partnership program with the Centers for Independent Living. These eight centers are regionally located statewide to serve all Minnesotans with physical disabilities. “The intent is to address local communities’ needs by spending money within an expanded local region rather than just within a town,” explains Jim Koch, Marketing Director, “and thereby making a difference in the lives of Minnesotans.”
WHAT IS MS?
With 200 new cases diagnosed nationally each week, it is estimated that 250,000 persons in the U.S. have MS with more than 5,000 of them in Minnesota.
Multiple sclerosis is a chronic disorder that causes the nerve cells in the brain and spinal cord to lose their insulating myelin. As a result, the high speed transmission of electrochemical messages between the brain, spinal cord and other parts of the body “short circuits”. Specifically, MS results when the myelin sheathing that surrounds the nerve fibers in the brain and spinal cord are damaged by the disease process. In the place of the myelin, patches of scar tissue are formed short-circuiting the transmission of electrochemical impulses.
Symptoms of MS vary greatly from individual to individual. These symptoms may include tingling sensations, numbness, slurred speech, blurred or double vision, weakness, poor coordination, fatigue and paralysis. Thus, MS can affect one’s ability to perform routine skills. There is no cure, however, much can be done to help people function at their best level on a day-to-day basis.
RESEARCH
MS is the most common neurological disease among adults in the 20-50 age group.
Two major research advances in 1990 focused on rebuilding myelin that is damaged in MS. One set of studies suggests healthy myelin making cells can be transplanted to repair damaged myelin. A second series of studies found that a combination of two components of myelin could potentially be used in a vaccination approach which could prevent further disease damage. Both of these advances are connected with complex, multifaceted research.
Today we now know, however, that MS is not directly inherited. The genetics of MS are very complex, with more than one gene controlling susceptibility. Studies indicate that certain genes control susceptibility. Understanding the genetic factors involved in MS will help researchers determine risk and perhaps control this debilitating disease.
PROGRAMS AND SERVICES
All of the programs are designed to assist individuals to successfully live with multiple sclerosis. The MS Society offers counseling/ support groups, information and referrals to community resources, education, recreation and employment programs across Minnesota. Other programs offered include an equipment loan program, publications and long term care.
A professional staff is available to answer your questions and provide accurate information. Please call 870-1500 or 1-800-582-5296 toll-free if outside the metro area for information.
FUNDRAISING EFFORTS
The MS Society has a strong track record in successful fundraising conducted professionally. The traditional fundraising efforts are carried on throughout the year enabling participants to raise money for MS. Among the seasonal events are four bike tours; the MS 150 and a loop tour, TRAM (The Ride Across Minnesota) and Septemberfest; the Super Cities WALK and the River Road Run, a 600-mile motorcycle tour. Winter events include the MS/Polaris Sno Rally snowmobile tour and a cross country ski event. School children raise pledges and read books for the READaTHON program while bartenders statewide give their time and efforts to raise money in the UGLY (Understanding, Generous, Lovable, You) Bartender Contest.
Each year raising new funds through special events becomes more challenging due, in part, to competition from other worthwhile organizations also raising funds. Although the fundraising quest is never ending, neither are the needs of Minnesotans with physical disabilities. The MS Society mission continues to keep sharply focused on working toward an accessible Minnesota.
VOLUNTEER SUPPORT
Fundraising efforts for the MS Society could never succeed without a committed network of more than 3,000 Minnesotan volunteers. Many of them, as well as participants, have connections with multiple sclerosis through family, friends or business relationships. They consist of individuals, families and/or organizations. Their contributions of time, energy and enthusiasm are integral to the success of our services and events. Many volunteers return annually to work the same event. Large events, such as the weekend MS 150 bike tour, require 800 volunteers in order to run smoothly.
“I started volunteering for the MS Society for something to do, and I developed so many friendships with the clients who have MS that now it’s like volunteering for and with all my friends. The friendships are what really keep me going”. says Dave Hanson
Hanson has volunteered since 1983 with his first involvement assisting at MS Camp. He has continued giving of his time in numerous other events, get away weekends, Brunch Club and general telephone calling. Volunteers are motivated in many different ways. Some desire experi ence and recognition, while others are completing educational internships. All of them agree they volunteer “to help a good cause”.
It is the combined effort of many contributing factors and people which makes the Multiple Sclerosis Society a successful organization. An organization which is dedicated to its mission of not only raising funds to help discover a cure for a disease, but also advocating for the rights of all physically disabled individuals to truly make Minnesota accessible for all.
