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8 Resources That Can Make You a Better MS Advocate

By Gay Falkowski

MS awareness is so important when it comes to generating support for changes that need to happen — politically, economically, and socially — to improve quality of life for people living with MS. Our call to action during Awareness Month involves asking everyone in the MS community to learn more about how to be a better advocate for the MS cause. The following websites (and one newsletter) can help. ‘Orange’ you excited to read about the issues and discover how you can make a difference?

1) The Multiple Sclerosis Coalition: MSCoalition.org

The Multiple Sclerosis Coalition is an affiliation of independent MS organizations dedicated to enhancing the quality of life for all those affected by MS. The MSC’s entire membership provides support for the Advancing Research for Neurological Diseases Act of 2015 (H.R. 292). This act will offer the Centers for Disease Control and Prevention a guide in collecting information on how many people in the U.S. have MS and their demographic characteristics. This will provide researchers with basic information about the disease.

2) Multiple Sclerosis Foundation’s Movers and Shakers newsletter

Do you want to advocate for yourself and for the MS community but don't know where to start? Subscribe to Movers and Shakers. This advocacy e-newsletter keeps readers up to date each month with the current issues facing the MS community, and provides helpful tips on how to get more involved. There are links to provide support for research, surveys to forward research, a short how-to on an advocacy point, and a profile of an MS Mover & Shaker who is raising awareness in the community. No matter what your level of involvement or activity, there's something everyone can do in Movers and Shakers.

3) The American Brain Coalition

The American Brain Coalition is an umbrella organization for patient advocacy groups, scientific societies, and medical associations that join forces to advocate for biomedical research and other areas of common interest. A 501(c)(4) nonprofit organization can contribute the vast majority of its efforts toward lobbying. Because advocacy and lobbying are the main focus of the coalition’s mission and vision, the goal was to establish an organization that could influence legislation affecting the patient, research, and clinical communities while following government rules for lobbying expenditures.

4) Multiple Sclerosis International Federation

MSIF is a global network of 44 organizations from around the world. Protecting and advocating for the rights of people with MS is at the heart of this organization. Its approach to advocacy has five components:

  • Providing member organizations with research reports, films, and other resources to advocate for changes that benefit people with MS in their country.

  • Taking part in advocacy initiatives as part of networks and collaborations such as the International Alliance of Patients’ Organizations and the International Pediatric Multiple Sclerosis Study Group.

  • Raising awareness of MS to create an enabling environment for members’ advocacy and other work.

  • Supporting advocacy through capacity building/training in development of emerging national organizations.

  • Where and when appropriate, working with or advocate to global and international, bilateral/multilateral bodies directly.

5) WhiteHouse.gov

WhiteHouse.gov is the official website of the White House and is owned by the United States government. Launched in October 1994, it contains general American history information, as well as current news pertaining to the president, press briefings, proclamations, executive orders, and any speeches the president has made on the radio.

6) USA.gov

As the U.S. government's official web portal, USA.gov provides easy access to U.S. government information and services on the web. Go to this website to contact your representative in the U.S. Congress.

You can send an email to your elected officials using the websites for the U.S. House of Representatives or the U.S. Senate. If you don’t know how to find the website of your Representative or Senator, this website will lead you through it. Once you get to the website of the elected official you want to contact, look for the “contact” link and click on it to find a web form to send your message.

7) Congress.org

Congress.org is a nonpartisan website dedicated to building a knowledge base for professionals wishing to better engage their communities. Positioning your group as the trustworthy thought leader in the arena will only help as your issues evolve today and into the future. There’s a link to a blog that highlights successful choices organizations are making and how those decisions can benefit your campaigns. Also find regular updates on trends and major policy activity at the state level as well as a basic overview of advocacy, where it’s been, and where it’s going. This site provides a nonpartisan resource for the latest news from Capitol Hill.

8) Change.org

With technology, it's now possible for anyone to start a campaign for change and immediately mobilize hundreds of others locally or hundreds of thousands around the world, making governments and companies more responsive and accountable. Change.org says it’s the world’s largest petition platform, empowering people everywhere to create the change they want to see. There are more than 85 million Change.org users in 196 countries, and every day people use it to start campaigns of all kinds. By providing online tools for gathering support, change.org wants to accelerate this dramatic shift. The goal is to make it easier to make a difference and to inspire everyone to discover what's possible when they stand up and speak out.