MSAA's Programs and Services

During the past 33 years, MSAA has developed and implemented vital programs and services in five areas, all aimed at fulfilling MSAA’s mission of easing the day-to-day challenges faced by individuals with MS, their families, and their care partners. One important service has been The Motivator, and while thousands of individuals have been receiving this quarterly magazine for several years, readers may not be familiar with all the other services that MSAA provides.

This article details MSAA’s five areas of programs and services, along with specifics on how to participate in the programs. Additionalinformation may be found in MSAA’s new Programs and Services Guide. Please call MSAA at (800) 532-7667 to get more information or to request a free copy of the guide.

#1: Offering Lifelines

MSAA’s “Offering Lifelines” area of service includes consultation and support. A toll-free telephone Helpline allows individuals with MS, family members, and care partners to speak directly with one of MSAA’s experienced consultants. This may be someone with a social services or counseling background, or one of MSAA’s trained peer consultants who can talk first-hand about the many issues and emotions that can accompany MS.

Helpline consultants are able to recommend the program(s) offered by MSAA that would be of help to the caller, and assist him or her with the application process. MSAA’s Helpline is also an excellent resource for learning about and connecting to local professionals and groups specializing in MS or issues relating to a client’s situation. For instance, MSAA’s consultants can provide contacts for and/or information about:

The MSAA Helpline consultants can help a client prepare for a visit to his or her physician. Under the direction of MSAA’s chief medical officer, consultants can provide much information about symptoms, how they are managed, and medications for the treatment of MS. From this, clients and care partners may prepare questions for their healthcare professional. Additionally, Helpline consultants may assist clients with the management of their overall healthcare, including reminders of regular tests and checkups needed for health issues unrelated to MS.

Individuals with MS, care partners, family members, and friends are invited to call MSAA’s Helpline. Consultants are there to listen, provide reassurance and encouragement, answer questions, and link individuals to appropriate services.
MSAA’s Helpline may be reached by calling:

(800) LEARN MS or (800) 532-7667.
Monday through Thursday, 9:00 am to 8:00 pm, eastern time
Friday, 9:00 am to 5:00 pm, eastern time

Reassurance calls are made by MSAA staff and volunteers to clients, letting them know of MSAA’s concern and informing them of upcoming MSAA activities and events. MSAA’s Lending Library offers a collection of more than 230 MS resources on diagnosis, symptoms, and treatments, along with books that inspire through personal experiences and life stories. MSAA loans and mails the materials free of charge, along with instructions for returning them at no cost. For highlighted books and contact information, please see page 48.

MSAA’s own publications also provide a great deal of helpful and important information. These cover a range of subjects such as medical research and treatments, symptom management, general information, and ways to help cope with the disease. All of MSAA’s publications are free of charge. Available publications include: quarterly issues of The Motivator; Multiple Sclerosis – The Process and Medical Treatments; Multiple Sclerosis – Managing Symptoms; All About Multiple Sclerosis; MSAA’s Programs and Services Guide, plus Multiple Sclerosis and Cooling.

#2: Branching Out

MSAA support groups typically meet monthly and provide a forum in which clients, family members, and care partners may discuss the challenges and emotions each is experiencing. Support groups frequently involve other activities, such as exercise, massage therapy, and luncheons. Many of MSAA’s support group participants have chosen to reach out within their own communities and provide services to others with MS. For information on starting a support group in your area, please see this issue’s Program Notes on page 41.

Awareness events include conferences with educational workshops, guest speakers, and information on helpful products or services. You may contact the national headquarters or the regional office in your area for specific event information.

MSAA’s Networking Program facilitates peer support and friendship. MSAA staff coordinates this program, which enables people with MS or their care partners to exchange email or letters. For more information or to participate, please see the inside back cover of this issue.

#3: Finding Answers

One way MSAA helps individuals to find answers is through assistance in acquiring magnetic resonance imaging (MRI), which is used to help diagnose MS and to evaluate both disease progression and treatment effectiveness. An MRI exam can often give doctors an “inside view” of disease activity.

The MRI Diagnostic Fund helps individuals obtain an initial diagnostic MRI by working with insurance companies and doctors’ offices. In cases of under or non-insured individuals, MSAA can also assist with payment for a diagnostic MRI. Certain income limits apply.

The MSAA MRI Institute provides insurance advocacy and financial assistance to those in need of follow-up MRI exams to examine sub-clinical disease activity and/or treatment effectiveness. Similar to the MRI Diagnostic Fund, certain income limits apply for financial assistance. Individuals with any income are eligible for advocacy to assist in securing insurance coverage for an MRI if denied by their insurance company.

Symptom management research is another way that MSAA looks to find answers. Testing for safety and effectiveness, MSAA has sponsored ground-breaking studies in areas such as cooling, bee venom therapy, acupuncture, and electromagnetic field therapy. More studies in other areas are planned for the future.

#4: Breaking Down Barriers

The Pathways for Independence Program is designed to make homes safer and more accessible for people with MS and their families. Under the Pathways Program, a person with MS receives an in-home assessment by a trained MSAA volunteer. The volunteer sends the assessment to MSAA for review. Once approved, MSAA pays for various modifications to the home, up to a budgetary limit.

These modifications can range from the purchase of adaptive equipment such as grab bars and shower chairs, to the construction of ramps and wider doorways. By making these changes to the home, people with MS can regain lost independence, enjoy greater mobility, and have increased involvement with friends and family.

The Barrier-Free Housing Program offers specially constructed apartments that are completely wheelchair accessible, offering residents a safe and comfortable environment in which to live. On-site social services are available at each housing complex to provide additional support to residents. Presently, MSAA has 125 of these apartments in five separate complexes; four of which are located in New Jersey, and one in North Carolina.

#5: Easing Daily Life

“Easing Daily Life” provides products that assist clients with their day-to-day needs and comfort. The Equipment Distribution Program* ships and loans a varied inventory of equipment to clients at no charge (certain income requirements apply, as well as limits to the number of items borrowed). Examples include special eating utensils, dressing aids, bed railings, and grab bars, which are designed to increase comfort, safety, and/or mobility.

The Cooling Equipment Distribution Program* provides special cooling apparel at no charge to individuals with MS. Research has shown that many individuals with heat-sensitive MS find temporary relief of certain symptoms by wearing active cooling
garments. Among others, symptom relief may include improvements in energy level, cognitive processing, and motor function through the use of such cooling devices.

Cooling equipment includes “active” suits and “passive” cooling apparel. Active suits have a separate cooling unit that circulates cool liquid through a vest and cap worn by the user. Passive cooling apparel includes vests, collars, bandanas, and wristbands that either hold cool inserts or contain special material that remains cool for up to two hours.

*Availability of equipment and cooling apparel is sometimes limited by budget constraints. Distribution is on an equitable first-come, first-served basis, in conjunction with income and insurance limitations.

Delivering MSAA’s Programs and Services
Overseeing MSAA’s activities is a Board of Directors comprised of volunteers from across the country. They meet throughout the year and form committees as needed to ensure that MSAA continues to grow as a service organization, meeting set goals and fulfilling its mission to ease the day-to-day challenges for individuals with MS, their families, and their care partners. MSAA is in compliance with the Better Business Bureau’s Wise Giving Council by passing all 23 of their rigorous standards.
Staff executives, directors, and other professionals work at the MSAA national headquarters in Cherry Hill, New Jersey, to raise funds for the association, put the existing programs and services into action, develop new programs, and work personally with the individuals who contact MSAA. They also establish working relationships with medical agencies, pharmaceutical companies, and other professionals. MSAA’s staff attends medical conferences and educational seminars, all in an effort to provide the best possible services to the MS community.

MSAA Chief Medical Officer Jack Burks, MD, is a highly accomplished neurologist and MS expert. The chief medical officer’s job is to review MSAA’s programs and services, helping to see that they fit the needs of individuals with MS and reflect the most current medical information available. MSAA’s chief medical officer also chairs MSAA’s Healthcare Advisory Council, a nationwide multidisciplinary team of healthcare professionals. This council meets to advise on the latest healthcare procedures and to recommend new programs as well as research projects to MSAA.

MSAA Regional and Field Offices
In addition to the many professionals serving on a national level, MSAA also has directors and staff at regional and field offices across the country. The regional offices support MSAA’s national programs by:

While MSAA’s national office serves clients throughout the United States, regional offices can provide additional assistance locally and in several surrounding states. A field office works as an extension to its regional office. MSAA’s network of regional and field offices are constantly expanding, and additional offices are being planned. Individuals interested in any of MSAA’s regional activities may contact their nearest regional office (please see pages 42-47 for contact information).

How to Support MSAA’s Mission
As a nonprofit, charitable organization, MSAA depends on the generosity of others to fund these important programs and services. Anyone wishing to help with this cause may do so in many ways.

  1. Volunteer: People are always needed to assist with MSAA’s programs and services, including support groups, reassurance calls, special events, and the Pathways for Independence Program (providing home modifications).
  2. Fundraising: Throughout the year, MSAA and its regions conduct various fundraising activities to pay for the vital
    programs and services it provides. Individuals are always relied upon to help run these events and make such fundraisers a big success.
  3. Donations: MSAA exists and continues to grow as a direct result of the money donated to the organization. MSAA must raise the funds it needs to provide programs and services each year. All gifts are voluntary and appreciated. Donations may be made through:
    • Individual contributions (check or credit card payment directly to MSAA; contributions may also be made through MSAA’s website at www.msaa.com)
    • Planned giving (such as wills, bequests, and memorials)
    • Corporate giving (individual contributions along with matching gifts from one’s employer; or grants given by a company – sometimes for a particular project)
    • Other donations (such as a used car or clothing)

Any help or assistance to support MSAA’s mission of aiding individuals with MS is greatly appreciated. To inquire about volunteering, fundraising, or making donations, please contact MSAA at the phone number and address listed below. 

Multiple Sclerosis Association of America
National Headquarters
706 Haddonfield Road
Cherry Hill, New Jersey 08002
Phone: (800) 532-7667
Fax: (856) 661-9797
E-mail: msaa@msaa.com
Website: www.msaa.com