Program Notes

MSAA Launches My MS Resource Locator

By Peter Damiri
Senior Director of Programs

As an organization with more than 40 years of service to the multiple sclerosis community, MSAA fully understands the complexity of MS and how each person’s experience is truly unique and ever changing.Whether you are recently diagnosed or living with MS for many years, new and challenging issues can arise at any time. Unfortunately, locating accurate, well-researched information and resources with a specific focus on multiple sclerosis can also be just as challenging.

Recognizing these factors and the need to assist our MS constituents, MSAA is extremely proud to announce the creation of a new national program titled, My MS Resource Locator. Designed as a tool to help find the answers you need, My MS Resource Locator is an MS-specific database offering targeted information and unique support services, including detailed guides. The carefully checked database contains listings of national, state, and where appropriate, local resources to help connect you to the information and services you need.

Supported by a grant from Novartis Pharmaceuticals Corporation, the development of My MS Resource Locator originated as an internal database used by the MSAA Client Services department. With the long-term goal of making this database available to the MS community through our website, MSAA has worked extensively to prepare and expand the program for public access. Through the continued support of Novartis, MSAA has been able to incorporate many new upgrades, add new listings, refine the searchable categories, and develop muchneeded companion guides to help focus visitors on understanding and selecting the most appropriate resource to meet their needs.

My MS Resource Locator is accessed at resources.mymsaa.org. Its categories include: Education/Employment, Financial Assistance, Health and Wellness, Housing, Insurance, Legal, Medical, Resources for Managing Chronic Illness, Therapy and Rehabilitation Services, and Products/Equipment for Managing Disability.

The guides for these topics offer comprehensive definitions of key terms, useful descriptions of products or services, and helpful tips or suggested questions to ask when contacting the resource.

“We are very excited to see this project progress through its many stages, revisions, and upgrades, and now be able to share it directly with the MS community through our website,” states MSAA Chief Operating Officer Robert Rapp. “While internet search engines can be useful for many purposes, locating reliable, accurate resources specific to MS can often lead to a frustrating and disappointing experience for the online user. The categories and information included in My MS Resource Locator direct users toward MS-focused content and includes the benefits of detailed explanations and helpful advice. Also, as another effort to assist our clients, MSAA’s trained Helpline consultants continue to be available to provide additional support and answer any questions through our tollfree phone line and email.”

As mentioned, a key component in the creation of My MS Resource Locator is the inclusion of guides for all topics. For example, visitors who explore the Health and Wellness section can find helpful information on exercise and MS. This includes suggested questions to ask their doctor prior to starting a program, strategies for safe and effective workouts, and descriptions about many common activities such as aquatics, yoga, and hippotherapy.

The development of My MS Resource Locator as a tool to help our clients find targeted resources and learn about strategies regarding the successful management of MS is part of a new philosophy supported by MSAA called Shared Management. This is a concept whereby both the patient and healthcare provider have a shared responsibility for working together and striving to achieve the best health outcomes. To support this effort, MSAA is continuing to develop a series of tools to help our clients become proactive and work toward better health. As you may know, we have recently developed our S.E.A.R.C.H.™ program, which helps identify key questions to ask your doctor when “searching” for a diseasemodifying therapy. Also, the development of MSAA’s mobile phone application, My MS Manager™, has generated more than 6,000 free downloads, allowing patients to input and store their medical information, track symptoms, and create specialized reports to share with their doctor.

As we launch this very new and exciting program initiative, we invite everyone to log onto resources.mymsaa.org, access My MS Resource Locator, and provide us with your comments and feedback. Please also feel free to call and speak to our Helpline staff at (800) 532-7667 to learn about this and other MSAA programs

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