Multiple SclerosisAssociationof America

Thi rd Ed i t ion

MSAA

Programs andServices Guide

Multiple SclerosisAssociation of AmericaPrograms and Services Guide

THIRD EDITION

Written by: Susan Wells CourtneyEdited by: Andrea Borkowski, Robert Rapp,

Peter Damiri, and Cindy Richman

Copyright © Multiple Sclerosis Association of America, 2006, 2005, 2004, 2003. All rights

reserved. This booklet is protected by copyright. No part of it may be reproduced, stored

in a retrieval system, or transmitted in any form or by any means, electronic, mechanical,

photocopying, recording, or otherwise, without prior written permission from MSAA.

The information in this booklet is not to be used to determine medical treatments,

drug therapies, dosages, or changes in lifestyle for a particular individual. MSAA does

not endorse any product, brand, or treatment. People with MS should always seek

medical care through a qualified physician.

Those affiliated with this booklet and MSAA cannot be held responsible for

any unintentional errors in the writing of this booklet, or changes in information that may

occur, possibly affecting certain details of an explanation, assumption, or treatment.

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MSAA

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Table of ContentsIntroduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Multiple Sclerosis Association of America . . . . . . . . . . . . . . . . 3MSAA’s Mission. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Facts about Multiple Sclerosis . . . . . . . . . . . . . . . . . . . . . 3For More Information . . . . . . . . . . . . . . . . . . . . . . . . . . 3

MSAA’s Programs and Services . . . . . . . . . . . . . 4

OFFERING LIFELINES . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Toll-free Telephone Helpline . . . . . . . . . . . . . . . . . . . . . . . . 4Lending Library . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6MSAA Publications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

BRANCHING OUT . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Awareness Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Networking Program . . . . . . . . . . . . . . . . . . . . . . . . . . 8

FINDING ANSWERS . . . . . . . . . . . . . . . . . . . . . . . . . . 8MRI Diagnostic Fund . . . . . . . . . . . . . . . . . . . . . . . . . . 9MSAA MRI Institute . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

BREAKING DOWN BARRIERS . . . . . . . . . . . . . . . . . . . . 9Home Modification Program. . . . . . . . . . . . . . . . . . . . . . 9Barrier-Free Housing Program . . . . . . . . . . . . . . . . . . . . 10

EASING DAILY LIFE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Equipment Distribution Program . . . . . . . . . . . . . . . . . . . . . 11Cooling Equipment Distribution Program . . . . . . . . . . . . . . . 11

MSAA Regional Offices . . . . . . . . . . . . . . . . . . . . . 12

How to Support MSAA’s Mission . . . . . . . . . . . 14

Delivering MSAA’s Programs and Services . . . 15

Contacting MSAA. . . . . . . . . . . . . . . . . . . . . . . . . . . 16

IntroductionMultiple Sclerosis Association of America

Founded in 1970, the Multiple Sclerosis Association of America(MSAA) is a national, nonprofit organization dedicated to providingassistance for people affected by multiple sclerosis (MS). MSAA provides ongoing support and direct services to individuals with MS, their families, and their care partners.

MSAA’s Mission

The Multiple Sclerosis Association of America’s mission is to enrich the quality of life for individuals with multiple sclerosis.

Facts about Multiple SclerosisThe most common neurological disorder diagnosed in young

adults, MS is an autoimmune disease of the central nervous system.This disorder damages or destroys the protective covering (known as myelin) surrounding the nerves, and sometimes the nerves themselves, causing reduced communication between the brain andnerve pathways. MS is not contagious and does not shorten lifeexpectancy. Researchers continue to seek a cause and a cure.

Individuals with MS may have symptoms that include visualchanges, overwhelming fatigue, bladder and bowel dysfunction,numbness, dizziness, impaired mobility, chronic aching pain, andother physical, mental, and emotional difficulties. Heat intolerance is a classic MS tendency, where a rise in temperature (internally or externally) may temporarily increase symptoms.

For More Information

To learn more about MS, please contact MSAA. Trained consultants are available to answer questions and refer callers to professionals in their area. Several informative publications are available from MSAA, including a quarterly magazine, The Motivator.Additionally, MSAA has a Lending Library with more than 250 excel-lent references and books on MS. MSAA may be contacted by calling(800) 532-7667, or by visiting MSAA’s website at www.msaa.com.

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MSAA’s Programs and ServicesThe effects of MS vary widely from one individual to another.

Symptoms for some may come and go, while others may experiencea steady worsening of their disease. Each person’s specific symptomsvary greatly too. For example, one may have visual problems, numb-ness, and fatigue, while another may experience impaired mobility,weakness, and depression.

With so many variables, the needs of the MS population arediverse. For this reason, MSAA offers five categories of programsand services aimed at providing individualized assistance to peoplewith MS, their families, and their care partners.

#1: OFFERING LIFELINES

• Toll-free Telephone Helpline• Lending Library• MSAA Publications

The physical symptoms of MS often have a strong emotional impact. Individualswith MS may feel uncertain about the future and frustratedover the challenges MS may present; loneliness and depressionare common. Encouragement andunderstanding are key to helpingan individual get back on track, while valuable information helps to reduce fear and provide positive direction.

MSAA’s “Offering Lifelines” area of service includes consultationand support. A toll-free telephone Helpline allows individuals withMS, family members, and care partners, to speak directly with one ofMSAA’s experienced and trained consultants who can discuss themany issues and emotions that accompany this disorder.

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Helpline consultants are available to help individuals with MSadapt to the changes they may be experiencing. MSAA’s consultantscan offer encouragement and team with clients and their care partnersto identify obstacles and discover ways to overcome them. They mayalso recommend the programs offered by MSAA that would be ofhelp to the caller, and assist him or her with the application process.

MSAA’s Helpline is an excellent resource for learning about local professionals and groups specializing in MS or issues relating to a client’s situation. Among others, these include:

• MS research centers nationwide• Support groups nationwide• Patient education• Pharmaceutical financial assistance programs• Social Security programs• Americans with Disabilities Act• Employment issues• Vocational rehabilitation• Attorneys specializing in disability law• Advocacy groups nationwide• Mental health counselors• Safety tips• Physical therapy• Occupational therapy• Exercise• Overall healthcare information and resources

Under the direction of MSAA’s vice president & chief medicalofficer, MSAA’s Helpline consultants may provide current informationabout managing symptoms and the medications available for the long-term treatment of MS. This information helps clients and care partners to prepare questions for visits with their healthcare professional. Clients may also be assisted with the management of their overall healthcare, including reminders of regular tests andcheckups needed for health issues unrelated to MS.

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Individuals with MS, care partners, family members, and friendsare invited to call MSAA’s Helpline. Consultants are there to listen,provide reassurance and encouragement, answer questions, and linkindividuals to appropriate services.

MSAA’s Helpline also provides a bilingual service to members ofthe Spanish-speaking community. Individuals who prefer to speak withsomeone in Spanish about MS information, support, and communityresources may call the number listed below, and then dial extension 108.

MSAA’s Helpline may be reached by calling:(800) 532-7667

Monday through Thursday, 9:00 am to 8:00 pm, eastern timeFriday, 9:00 am to 5:00 pm, eastern time

Additionally, reassurance calls are made by MSAA staff to clients,letting them know of MSAA’s concern and informing them of upcomingMSAA activities and events. These calls help to raise spirits and giveclients an opportunity to discuss any issues they may have on theirmind, or to simply enjoy a conversation with someone who understands.

MSAA’s Lending Libraryoffers a collection of more than 250 MS resources on diagnosis, symptoms, and treatments, along withbooks that inspire through personalexperiences and life stories. Individualswishing to borrow one or more of these books need only to send in arequest form. MSAA loans and mails the materials free of charge,along with instructions for returning them at no cost.

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MSAA’s own publications also provide a great deal of helpfuland important information. These cover a range of subjects such asmedical research and treatments, symptom management, generalinformation, and ways to help cope with the disease. MSAA publishesa quarterly magazine, The Motivator, which includes informative anduplifting articles on vital issues, new research,treatments, and personal stories. All of MSAA’s publications are freeof charge and may be viewed ordownloaded at www.msaa.com.Publications may also berequested by contacting MSAA.

#2: BRANCHING OUT

• Support Groups• Awareness Events• Networking Program

Interacting or communicatingwith others who can relate personally to one’s situation can be therapeutic, comforting, andenjoyable. MSAA encourages new relationshipsand the opportunity for clients to share experiences and informationby sponsoring support groups, various activities, and awarenessevents in different areas across the United States. MSAA also connectspeople through its Networking Program.

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. Supportgroups frequently involve other activities, such as exercise, arts andcrafts, and luncheons. Many of MSAA’s support group participantshave chosen to reach out within their own communities and provideservices to others with MS. Awareness events include conferenceswith educational workshops, guest speakers, and information on helpful products or services.

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MSAA’s “Branching Out” area of service facilitates peer support and friendship through its Networking Program. MSAA’s staff coordinates this program, which enables peoplewith MS or their care partners toexchange email or letters.Individuals wishing to participateare sent a form and are asked tospecify: (1) if they are clients orcare partners, (2) their choice of

listing a mailing address and/or email address, and (3) a few of theirpersonal interests. Participants receive updated lists of “clients” or“care partners,” which include names, addresses, and interests.Participants may correspond with anyone on the list.

#3: FINDING ANSWERS

• MRI Diagnostic Fund• MSAA MRI Institute

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 andtreatment efficacy. Given the nature of MS, with its characteristic flare-upsand remissions, MS can be very difficult to diagnose. Additionally, MSactivity is often sub-clinical, which means that the illness may continue to progress without any outward signs or increased symptoms. An MRIexam can often give doctors the answers they need to help diagnose MSand to get an “inside view” of disease activity.

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The MRI Diagnostic Fundhelps individuals obtain an initialdiagnostic MRI by working withinsurance companies and doctors’offices. For individuals with little orno insurance, MSAA can also assistwith payment for a diagnostic MRI.Certain income limits apply.

The MSAA MRI Instituteprovides insurance advocacy andfinancial assistance to those in need of follow-up MRI exams to examinedisease activity and/or treatment effectiveness. Similar to the MRIDiagnostic Fund, certain income limits apply for financial assistance. Individuals with any income are eligible for advocacy to assist in securing insurance coverage.

#4: BREAKING DOWN BARRIERS

• Home Modification Program• Barrier-Free Housing Program

For individuals with MS who have limited mobility or who haveother physical needs, MSAA may be able to help them with differenttypes of housing options. “Breaking Down Barriers” encompasses twoprograms that assist individuals with different mobility issues. (Someincome limits may apply.)

The Home Modification Program is designed to makehomes safer and more accessible for people with MS and their families. Under the Home Modification Program, a person’s home is assessed for the work needed, then MSAA reviews the assessment.Once approved, MSAA pays for various modifications to the home,up to a budgetary limit.

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These modifications canrange from the purchase of adaptiveequipment such as grab bars andshower chairs, to the constructionof ramps and wider doorways. Bymaking these changes to the home,people with MS can regain lostindependence, enjoy greatermobility, and have increasedinvolvement with friends and family.

The Barrier-FreeHousing Program offers125 specially constructedapartments that are completely wheelchairaccessible, offering residents a safe and comfortable environmentin which to live. Located in New Jersey and NorthCarolina, on-site social services are available at each housing complex to provide additional support to residents.

#5: EASING DAILY LIFE

• Equipment Distribution Program• Cooling Equipment Distribution Program

“Easing Daily Life” provides products and services that assistclients with their day-to-day needs and comfort. Requested equipmentis shipped to clients at no charge (certain income requirements apply,as well as limits to the number of items obtained). These productsincrease comfort, safety, and/or mobility.

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MSAA Commons in Cherry Hill, New Jersey

MSAA’s Equipment Distribution Program provides a varied inventory of equipment to clients at no charge. Examples of equipment available include:

• Easy-grip eating utensils, plates, and cups

• Dressing aids• Bed railings and grab bars• Tub/shower seats, shower

fixtures, and toilet seats• Manual wheelchairs and

electric scooters• Portable ramps

MSAA’s CoolingEquipment DistributionProgram is a highly successful branch of theEquipment Distribution Program. In association with the National Aeronautics andSpace Administration (NASA), MSAA has conducted extensive researchinto the effects of moderate, controlled cooling on individuals with heat-sensitive MS. Along with other research studies, results have repeatedlyshown that cooling the body can help lessen the negative effects of heatand humidity for individuals with heat-sensitive MS.

The Cooling Equipment Distribution Program provides specialcooling apparel at no charge to individuals with MS. Various types of specially designed apparel, such as vests, smocks, collars, hats,and neck/wrist wraps, are available through MSAA to help peoplewith MS who are sensitive to heat. Such products use different methods to create a temporary cooling effect. These items either hold cool inserts or contain special material that remains cool for two to four hours. MSAA also provides vests designed for therapeuticcooling, which reduces brain/spine temperature for those with moresevere heat sensitivity (these suits require a doctor’s prescription).

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MSAA Regional OfficesIn addition to the many professionals serving on a national level

(see page 15 for more information), MSAA also has directors and staffat regional offices across the country. The regional offices supportMSAA’s mission by:

• Organizing and holding support group meetings

• Conducting awareness events (through conferences, luncheons, and open houses)

• Sponsoring classes, workshops, and therapeutic services, such as massage therapy, cooling clinics, craft classes, exercise, hippotherapy (physical therapy through horseback riding), aquatics, and self-defense

• Bringing people together through networking and social events• Employing volunteers to assist with regional activities• Fundraising activities, such as the annual TransMontana

Snowmobile Ride

While MSAA’s national office serves clients throughout the United States, regional offices can provide additional assistance locally and in several surrounding states. Individuals interested in any MSAA activities may contact their nearest office (listed on next page) or visit www.msaa.com for more information.

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Each year, snowmobile riders take an adventuroussix-day trip through themountains of Montana toraise money for MSAA'sNorthwest Regional Office.

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Northeast Regional Office: 706 Haddonfield RoadCherry Hill, New Jersey 08002(800) 532-7667, ext. 149Event line: ext. 180Email: northeast@msaa.com

Southeast Regional Office:c/o MSAA National Headquarters706 Haddonfield RoadCherry Hill, New Jersey 08002(800) 532-7667, ext. 154Event line: ext. 187Email: southeast@msaa.com

Midwest Regional Office:13938A Cedar Road, #243University Heights, Ohio 44118(800) 532-7667, ext. 140Event line: ext. 184Email: midwest@msaa.com

South-Central Regional Office: 107 Avonshire TerraceHot Springs, Arkansas 71913-2205(800) 532-7667, ext. 137Event line: ext. 182Email: southcentral@msaa.com

Northwest Regional Office:600 Central Plaza, Suite #13Great Falls, Montana 59401(800) 532-7667, ext. 131Event line: ext. 185Email: northwest@msaa.com

Western Regional Office:1819 Polk Street, Mailbox #326San Francisco, California 94109(800) 532-7667, ext. 155Event line: ext. 189Email: western@msaa.com

For information about regional events and activities, please visitwww.msaa.com and select “Calendar of Events & Therapeutic Classes.”

How to Support MSAA’s MissionThe programs and services that MSAA performs are vital,

helping to fulfill the emotional, psychological, medical, and physicalneeds of individuals affected by MS. 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, resource detectives(individuals researching local resources), special events, and theHome Modification Program.

(2) Fundraising: Throughout the year, MSAA and its regions con-duct various fundraising activities to pay for the vital programs andservices it provides. Individuals are always relied upon to volunteer at these events and make such fundraisers a big success.

(3) Donations: MSAA exists and continues to grow as a direct resultof the money donated to the organization. All gifts are voluntary andgreatly appreciated as MSAA must raise the funds it needs to provideprograms and services each year. The donations may be made through:

• Individual contributions (a 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 cell phone or clothing)

Help or assistance to MSAA in any way is truly appreciated. To inquire about volunteering, fundraising, or making donations,please contact MSAA at (800) 532-7667 or through MSAA’s website at www.msaa.com.

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Delivering MSAA’s Programs and Services

The five areas of programs and services mentioned in this booklethave been developed to enrich the quality of life for individuals withMS. Programs and services are continually developed and improvedupon to best meet the needs of the MS community.

Overseeing MSAA’s activities is a national Board of Directors com-prised of volunteers from across the country. They meet throughout theyear to ensure that MSAA continues to grow as a service organization,meeting set goals and fulfilling its mission. MSAA is in compliance withthe Better Business Bureau’s Wise Giving Council by passing all 23 oftheir rigorous standards. MSAA is also a member of America’s Charities.

Staff executives, directors, and other professionals work at theMSAA national headquarters in Cherry Hill, New Jersey to raise fundsfor the association, put the existing programs and services into action,develop new programs, and work personally with the individuals whocontact MSAA. They also establish working relationships with medicalagencies, pharmaceutical companies, and other professionals. MSAA’sstaff attends medical conferences and educational seminars, all in aneffort to provide the best possible services to the MS community.

MSAA’s vice president & chief medical officer is a highly accom-plished neurologist and MS expert. The vice president & chief medicalofficer’s job is to review MSAA’s programs and services, helping to seethat they fit the needs of individuals with MS and reflect the most cur-rent medical information available. This officer also chairs MSAA’sHealthcare Advisory Council, a nationwide multidisciplinary team ofhealthcare professionals. This council meets to review the latesthealthcare procedures and to recommend new programs as well asspecial projects to MSAA.

Examples of new programs being piloted include the Life CoachProgram and the MS:i (MS Information) initiative. In the first program,MSAA-trained life coaches will assist individuals with MS to developpositive coping skills and problem-solving strategies, helping them

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adjust to the ever-changing nature of MS. The second program, MS:i,will use technology to deliver valuable education directly to individu-als in the convenience of their own home, building new skills andincreasing awareness. These are just two examples of new directionsthat MSAA is taking to enrich the lives of people affected by MS.

MSAA has been providing vital services to the MS community formore than 30 years. The future looks brighter than ever for individualswith MS, as new treatments and greater knowledge about the illnesscontinue to come forward. We invite everyone interested in the MScommunity to contact MSAA for information, assistance, volunteer andfundraising opportunities, or to receive MSAA literature, including ourquarterly magazine, The Motivator. Please contact MSAA through thephone number, address, or website listed below.

Contacting MSAAFor More Information:

• On the Multiple Sclerosis Association of America, its mission, and its programs and services

• On multiple sclerosis, its symptoms, its treatments, new research, and to talk to a Helpline consultant

• On how MSAA may help someone with MS, or a family member, care partner, or friend

• On how to help MSAA continue to grow and serve the MS community

Please Contact:

Multiple Sclerosis Association of AmericaNational Headquarters706 Haddonfield Road

Cherry Hill, New Jersey 08002

Phone: (800) 532-7667 E-mail: msaa@msaa.comFax: (856) 661-9797 Website: www.msaa.com

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National Headquarters706 Haddonfield Road

Cherry Hill, New Jersey 08002Phone: (856) 488-4500

Fax: (856) 661-9797Email: msaa@msaa.com

Website: www.msaa.com

(800) 532-7667