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Home > Privacy Policy & Terms of Use

MSAA Terms & Conditions

Web Terms and Conditions

The Multiple Sclerosis Association of America (MSAA) is a nonprofit organization whose mission is to enrich the quality of life for everyone affected by multiple sclerosis. The goal of this website, www.mymsaa.org (the "Site" or "Website"), is to provide a source of information to our clients, their care partners, and the general public on MS. The information that is found on the Site is based on professional advice, published research, and expert opinion, but does not represent therapeutic recommendation or prescription. MSAA strives to provide useful, up-to-date information on matters of concern to MS patients and their families. This material is intended for general informational purposes only, and it does not constitute medical advice. You should not use the information presented as a means of diagnosis or for determining treatment. For diagnosis and treatment options, you are urged to consult your physician. Those affiliated with the Site and MSAA cannot be held responsible for any unintentional errors in the writing of this website or changes in information that may occur, possibly affecting certain details of an explanation, assumption, or treatment. MSAA does not endorse nor recommend, products, services or items that appear on this website.

The entire contents and design of the Site are protected under U.S. and international copyright laws. The Site is owned and operated by MSAA and unless specifically stated or otherwise indicated, all content, including, but not limited to, trademarks, logos, trade names, text, data, messages, pictures, images, video, audio, graphics, buttons, data compilations, icons, code, links, or other electronic files or things that can be uploaded, downloaded, copied from, or posted on the Internet (referred to hereafter as "Content") on the Site is the property of MSAA and protected by intellectual property laws.

The Site is for your own personal noncommercial use. You may download materials for personal use only. You may not modify, distribute, transmit, display, or publish any materials contained on the Site without the prior written permission of MSAA or the appropriate copyright owner. Please refer to the copyright notice for more information.

Content owned by third parties may also appear on the Site, and you should respect those property rights as well. Content owned by third parties available on the Site is used by MSAA pursuant to a license from a third party. Your use of this Content must comply with the terms of that license.

MSAA does not represent that the Content provided on the Site is completely accurate or error free, and therefore any reliance on the Content is done so at your own risk. Any use of the Site or its Content other than for the uses allowed in these Terms of Use, including but not limited to other non-private, commercial purposes, is prohibited.

Any use of, or posting any Content on, the Site that could destroy, damage or impair any portion of the Site or any computers, systems, hardware or software used by us or other visitors to the Site, is prohibited.

Certain portions of the Site are password protected, and may only be accessed by authorized users with a valid login and password. Any attempt to gain unauthorized access to the S ite or its Content, or any computers, systems, hardware or software used by us or other visitors to the Site, through hacking or other similar means, is prohibited.

The Site is not intended for or marketed to children, but is intended for adults 18 years of age or older. By using or accessing the Site, you represent that you are 18 years of age or older.

Do not attempt to hack into, or bypass any security features of, the Site or any MSAA computers, servers, systems, hardware or software.

The Site is funded through various grants and donations. MSAA does not have or accept any paid links or advertising on the Site, mymsaa.org.

Submissions and the MSAA Blog

MSAA invites and encourages you to use the MSAA Blog, and other communication services facilities of the Site designed to allow you to communicate with the Internet community and the MSAA. Submissions, suggestions, content, postings or other materials you post or submit to or through the Site (hereafter "Submissions") are governed by these Terms of Use and the MSAA Blog Terms of Use.

Submissions and comments on the MSAA Blog may be moderated by the staff of MSAA and may not appear on the MSAA Blog until they have been reviewed and deemed appropriate for posting. MSAA encourages you to add Submissions and comments to the discussion on the MSAA Blog. All Submissions and comments on the MSAA Blog should be relevant to the topic and remain respectful of other authors and commentators. You are prohibited from posting or submitting any unlawful, threatening, defamatory, obscene, pornographic, or other material that would violate the law.

You are solely responsible for your Submissions and comments to the MSAA Blog, the consequences of posting those Submissions and comments, and the consequences of any reliance by you on the Submissions and comments posted by third parties. Y ou acknowledge and agree that MSAA does not assume or have any liability for any action or inaction by MSAA with respect to your Submissions and comments.

You hereby grant to MSAA a royalty-free, perpetual, irrevocable, worldwide, non-exclusive right and license to use, reproduce, modify, adapt, publish, translate, create derivative works from, distribute, perform, and display all Submissions and to incorporate such in other works in any form, media, or technology, now known or later developed without compensation to you.

By submitting your Submission or comments on the MSAA Blog, you hereby grant to MSAA the right, but not the obligation, to post, air, edit, exhibit, telecast, cablecast, webcast, re-use, publish, reproduce, use, license, print, distribute, or otherwise use your Submissions and comments and any accompanying personal identifying information and other information you provide via all forms of media now known or hereafter devised, worldwide, in perpetuity. MSAA may use the Submissions in its business without incurring any liability for royalties or other compensation.

MSAA is not required to treat any Submissions and comments as confidential. MSAA cautions you about disclosing any personally identifiable information about yourself or others through or on the Site, including the MSAA Blog. If you do not wish to be identified by you full name, please only enter your first name or your initials.

MSAA reserves the right to comply and cooperate with any and all legal requirements, legal authorities and/or law enforcement agencies, whether required or ordered to do so or not, regarding the investigation of, or request to disclose, information related to Submissions provided by you or the identity of you . BY ACCEPTING THESE TERMS OF USE, YOU WAIVE AND HOLD HARMLESS MSAA FROM ANY CLAIMS RESULTING FROM ANY ACTION TAKEN BY MSAA DURING OR AS A RESULT OF MSAA 'S INVESTIGATIONS AND/OR FROM ANY ACTIONS TAKEN AS A CONSEQUENCE OF INVESTIGATIONS BY EITHER MSAA OR LAW ENFORCEMENT AUTHORITIES.

Copyright Infringement

If you believe that any Content on the Site infringes your copyright and you want the Content removed from the Site, please send a detailed message to:

Designated Copyright Agent :

The Multiple Sclerosis Association of America
Amanda Bednar
706 Haddonfield Road, Cherry Hill, NJ 08002
webmaster@mymsaa.org

Under the Digital Millennium Copyright Act, the following information must be included in the message to us:

(i) A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.

(ii) Identification of the copyrighted work claimed to have been infringed, or, if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site.

(iii) Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit the service provider to locate the material.

(iv) Information reasonably sufficient to permit the service provider to contact the complaining party, such as an address, telephone number, and, if available, an electronic mail address at which the complaining party may be contacted.

(v) A statement that the complaining party has a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law.

(vi) A statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.

Other Intellectual Property Infringement

If you believe that any Content on the Site violates or infringes your intellectual property rights other than copyright claims referenced in the previous section, please send a detailed email to webmaster@mymsaa.org detailing your allegation or complaint. MSAA takes infringement of a party's intellectual property rights very seriously and will investigate the matter accordingly.

Cookies

We use cookies (small files that are sent to your web browser and stored on your computer's hard drive) to improve your website experience. The cookie is used to speed up your access to the website and the information you wish to see, but it does not contain any personal information. When you log on to our website our web server automatically records domain name and standard information about the operating system and web browser. To track your progress through the site and help us evaluate usage of the site, the server places a "cookie," a small text file with an identification number, on your machine. This automatically collected information is used for statistical purposes to help us manage our site.

Opting-Out

The majority of web browsers accept cookies but the "help" menu on your browser should give you options for preventing and accepting or receiving notice of new cookies. However, please be aware that if you block cookies, some website functionality may be lost. After gathering any user information, MSAA offers users the opportunity to remove their information from our active database so as not to receive further communication and/or to no longer interact with the website.

Data Use

We collect information on you only if you volunteer it. There are several ways you may volunteer information on the Site. These include completing a survey, sending an email inquiry to us, contributing online, or registering for or contributing to a participant in an event online. The information provided is collected and used to provide you with information about our programs and services available to you through MSAA. We generally respond to your request via postal service mail, email, or telephone depending on your request with our resources.

Sometimes we will use the information that you volunteer on several instances:

•  Mailings with information about multiple sclerosis and MSAA ‘s programs and events

•  Mailings to invite you to join MSAA or to help MSAA fulfill its mission

•  Telephone contact to invite you to help MSAA achieve its mission

•  Email contact to respond to your questions, comments, or suggestions

•  Email contact to alert you to multiple sclerosis news updates and programs, as well as invitations to join MSAA or to help MSAA fulfill its mission.

Acceptance of These Terms

By using our Website, you consent to the collection and use of this information by MSAA. If we decide to change these Terms of Use or the privacy policy therein, we will post those changes on this page so that you are always aware of what information we collect, how we use it, and under what circumstances we disclose it.

Link Policy

The Site may contain links to other sites. MSAA is not responsible for the content or accuracy of the information, or the privacy practices of these sites. You should review the privacy policy of these sites to learn more about what and how they collect and use any personal identification information. All websites who wish to link to mymsaa.org must be reviewed by a website editorial board and in some way represent MSAA's mission to enrich the quality of life for everyone affected by multiple sclerosis. If you are interested in linking to MSAA's website please contact MSAA's webmaster. MSAA reserves the right to determine which links to provide on the website as well as the right to terminate links at anytime. MSAA does not have or accept any paid links or advertising on its website mymsaa.org.

Donor Rights

MSAA has created and follows the Fundraising Standards established by the Board of Directors. These standards include:

Truthfulness in communication
Communications and donor expectations and intent
Reporting to donors
Controls over solicitors
Acknowledgements of grants,donations, and gifts in-kind
Donor requests
Registration of fundraising consultants
Acceptance of gifts

MSAA adheres to the Donor Bill of Rights, created by the American Association of Fund Raising Counsel (AAFRC), the Association for Healthcare Philanthropy (AHP), the Association of Fundraising Professionals (AFP), and the Council for Advancement and Support of Education (CASE). The full text of the Donor Bill of Rights can be found at www.afpnet.org/ethics/ethics_and_donors.

Donor Bill of Rights

As Published by the Association of Fundraising Professionals at www.afpnet.org

Philanthropy is based on voluntary actions for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To ensure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the nonprofit organizations and causes they are asked to support, we declare that all donors have these rights:

  1. To be informed of the organization's mission, of the way the organization intends to use donated resources, and its capacity to use donations effectively for their intended purposes .
  2. To be informed of the identity of those serving on the organization's governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.
  3. To have access to the organization's most recent financial statements.
  4. To be assured their gifts will be used for the purposes for which they were given.
  5. To receive appropriate acknowledgement and recognition.
  6. To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law.
  7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
  8. To be informed whether those seeking donations are volunteers, employees of the organization, or hired solicitors.
  9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
  10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

If you have any questions please contact MSAA's Development office by phone (800) 532-7667, extension 159 or through email at webmaster@mymsaa.org.

Security of Donation

If you are making a donation to MSAA online you will be directed to a secure website where you can make a donation to MSAA via credit card. MSAA will not be sharing this information you provide with any outside parties. All donations that are made online will only be handled by those who are either contracted by MSAA or are members of the internal staff. We have put in place appropriate physical, electronic, and managerial procedures to safeguard and help prevent unauthorized access, maintain data security, and correctly use the information we collect online.

Although we take appropriate measures to safeguard against unauthorized disclosures of information, we cannot assure you that personally identifiable information that we collect will never be disclosed in a manner that is inconsistent with this privacy notice. Inadvertent disclosures may result, for example, when third parties misrepresent their identities in asking the site for access to personally identifiable information about themselves for purpose of correcting possible factual errors in the data.

Sources of Information

MSAA uses peer-reviewed articles from PubMed (of the United States National Library of Medicine, National Institutes of Health) as well the United States Food and Drug Administration (FDA) for the majority of its medical information. Another important resource for study information is found at www.clinicaltrials.gov. If information is released from a pharmaceutical company, this is noted as well. Sources of information are provided within the copy or at the conclusion of any writing involving new research and/or claims.

Authors and Editors/Reviewers

Staff medical reviewer


Jack Burks, MD, MSAA Chief Medical Officer

All medical information is reviewed, edited, and approved by MSAA Chief Medical Officer Dr. Jack Burks. In addition to his position at MSAA, Dr. Burks is president of Burks & Associates, with an office based in Florida. He is an international multiple sclerosis (MS) neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies and advises patients, families, MS organizations, and healthcare groups. Dr. Burks is a clinical professor of neurology for the Herbert Wertheim College of Medicine at the Florida International University in Miami. He has written and edited three MS textbooks, as well as numerous chapters and articles on MS. In recent years, he has lectured and evaluated patients in more than 40 countries.

Staff writers


Susan Wells Courtney, Senior Writer and Creative Director

With more than 35 years of professional writing experience – 20 of which have been in the medical writing field – Ms. Courtney handles the majority of writing and editing duties for MSAA. She often writes MSAA’s news items, consulting peer-reviewed articles from PubMed (of the United States National Library of Medicine, National Institutes of Health) as well as the United States Food and Drug Administration (FDA). All new claims made within these articles are supported by the source. If information was released from a pharmaceutical company, this is noted as well. All medical information is then reviewed, edited, and approved by MSAA Chief Medical Officer Dr. Jack Burks (listed above). Ms. Courtney has a bachelor’s degree in English and completed a two-year certificate degree in advertising and journalism.

Peter Damiri, Vice President of Programs and Services

Mr. Damiri has extensive writing experience. He has been with MSAA for almost 25 years and worked as the director of public relations before moving to MSAA’s programs and services department. He writes about MSAA’s existing programs and services, as well as any new program initiatives. He is also involved with many other aspects of patient education, including overseeing the production of MSAA’s online educational videos and webinars. These are conducted by top professionals in MS research and treatment; these professionals are listed in the section under “MSAA MSi Programs.” Mr. Damiri has a bachelor’s degree in communications.

Staff Editor


Andrea L. Griesé, Vice President of Communications & Marketing

All written materials are reviewed by Ms. Griesé, who began her career with MSAA in 1996. She is an expert communications professional with 20 years of writing and public relations experience. Ms. Griesé has a bachelor’s degree in communications.

Professional, non-staff writers for MSAA


Stephen Krieger, MD

Dr. Stephen Krieger joined the Corinne Goldsmith Dickinson Center (CGDC) for MS as a fellow in multiple sclerosis. He received a 2006 American Academy of Neurology (AAN) Scholarship and a Sylvia Lawry Fellowship in clinical research. Dr. Krieger has a clinical practice at the CGDC for MS, and participates in several MS clinical trials, including those that study oral therapies and monoclonal antibodies. Dr. Krieger is on many advisory boards in the field of MS, and has presented original work on MS at the AAN, ECTRIMS, ACTRIMS, and CMSC meetings. He is a noted educator and is the neurology residency program director at Mount Sinai. He is an active member of the AAN, who awarded him an A.B. Baker Teacher Recognition Award in 2010.

Margaret M. McCormick, RN, BSN, MSCN

Ms. McCormick is an RN and an MS Certified Nurse. She began her career as an OB/GYN Nurse Practitioner in Minneapolis, Minnesota, working in the area of high-risk obstetrics. She has a strong background in women’s health with extensive experience educating patients on pregnancy, family planning, and birth control, as well as providing medical care and grief counseling to families who experienced loss in the perinatal setting. Ms. McCormick holds a BSN from the University of Minnesota, an MBA from the Wharton School of the University of Pennsylvania, and is currently pursuing a Master’s in Counseling Psychology at the Naropa University in Boulder, Colorado.

Diana M. Schneider, PhD (deceased)

Dr. Diana M. Schneider trained as a neurological chemist at UCLA, and subsequently worked for the National Institute of Neurological Disorders and Stroke and the Neurosciences Research Program at MIT. She had been in medical publishing since 1975, founding Demos Medical Publishing in 1986 and DiaMedica Publishing in 2005. In addition to publishing books on a range of patient-related topics on neurologic and other diseases, Dr. Schneider developed a number of patient-education articles for MSAA and served as a consultant to the National MS Society for its patient-education publications.

Attribution – Experts Specializing in MS

MSAA MSi PROGRAMS (MSAA’s online educational videos and webinars)


Please note: each video presenter or subject in the video has his or her credentials mentioned within the video, either verbally or via a graphic on the screen, as well as names/credentials listed next to each video.

A Closer Look at Multiple Sclerosis Symptoms – Part 1
Presenters: Jack Burks, MD; Allison Shadday, LCSW; Daniel Wynn, MD; and Donald Barone, DO

A Closer Look at the Importance of MS Treatment Adherence
Presenter: Jack Burks, MD

A Closer Look at The Future of MS Research
Presenter: Stephen Newman, MD

A Closer Look at Intimacy and Multiple Sclerosis
Presenter: Maria Chiara Carta, MD

A Closer Look at MS and Complementary and Alternative Medicine
Presenter: Allen Bowling, MD, PhD; Jingduan Yang, MD

A Closer Look at The Value of MRIs
Presenter: Diego Cadavid, MD

A Closer Look at Clinically Isolated Syndrome and MS
Presenter: Jack Burks, MD

A Closer Look at The Emotional Impact of MS
Presenter: Allison Shadday, LCSW

A Closer Look at Managing Stress and MS
Presenter: Allison Shadday, LCSW

Making Your Home Work For You
Presenter: Carol Siebert, MS, OTR/L, AOTA

An Introduction to Multiple Sclerosis
Presenters: Joanna Cooper, MD; Lynn Jehle, FNP

Talking With Your Children About MS
Presentation: Discussion with four families

A Closer Look at Managing MS Fatigue
Presenter: Allison Shadday, LCSW

A Closer Look at Employment and Multiple Sclerosis
Presenters: Lanny Perkins, Esq.; Sarah Perkins, Esq.

A Closer Look at Understanding Disability Benefits
Presenters: Lanny Perkins, Esq.; Sarah Perkins, Esq.

A Closer Look at The Benefits of Exercise
Presenters: Brad Hamler, Fitness Author and Post Rehabilitation Specialist

Art of Symptom Management Series

Program 1
Presenters: Adam Kaplin, MD, PhD; Chitra Krishnan, MHS; Michael Levy, MD, PhD

Program 2
Presenters: Daniel Kantor, MD; Constance Easterling, RN, MSN, ANP, MSCN

Program 3
Presenter: Elliot Frohman, MD, PhD

Program 4
Presenter: Anthony Reder, MD

Program 5
Presenter: Rana Zabad, MD; Kathleen Healey, APRN, PhD; Michael Feloney, MD

Program 6
Presenter: Thomas Chippendale, MD, PhD; Julie Chippendale, RN

A Closer Look at MS Research: 2009 and Beyond
Presenter: Clyde Markowitz, MD

A Closer Look at Multiple Sclerosis (Spanish)
(Un enfoque en la esclerosis multiple) Presenter: Flavia Nelson, MD

A Closer Look at Gilenya The First Oral Treatment for MS
Presenter: Jack Burks, MD

SEARCH (MSAA Live Webinar)
Presenter: Corey Ford, MD, PhD

Staying One Step Ahead – Live Webinar Series


Program 1
Presenter: Kathleen Zackowski, PhD, OTR

Program 2
Presenter: Brad Hamler, Fitness Author and Post Rehabilitation Specialist

Program 3
Presenter: Patricia Bobryk, MHS, PT, MSCS, ATP

Program 4
Presenters: Jennifer Tamar Kalina, MS, OTR/L, CCRC, MSCS

Financial Well-Being – Live Webinar Series


Program One: Being Money Smart
Presenters: Michael Morris, JD; Luke Reynolds, JD; Margaret Weisser, LSW; Elizabeth Jennings; Phyllis Pratt

Program Two: Working Towards Financial Wellness
Presenters: Margaret Weisser, LSW; Elizabeth Jennings

Program Three: Flex Your Financial Muscles
Presenters: Margaret Weisser, LSW; Elizabeth Jennings; Linda Jackson

Program Four: Invest in Yourself
Presenters: Michael Morris, JD; Cindy Richman; Kenneth Mitchell; Marlene Ware; Elizabeth Jennings

The Treatment and Management of MS Exacerbations (MSAA Live Webinar)
Presenter: Ben Thrower, MD

Identification and Management of MS Relapses (MSAA Live Webinar)
Presenter: Jennifer Smrtka, MSN, ARNP-C, MSCN

A Closer Look at The Importance of Treating and Managing MS Relapses (MSAA Live Webinar)
Presenter: Stephen Krieger, MD

Understanding Medicare in the New Era
Presenters: Katherine Fitzpatrick, BA, Education Coordinator, The Medicare Rights Center; Margaret Weisser, LSW, Manager of Client Services, MSAA

Disclosure of Funding Sources

MSAA’s site, mymsaa.org, is funded through various grants, sponsorships, and donations from private and corporate donors. MSAA does not have or accept any paid links or advertising on the Site. Link to MSAA Tax Returns < a href="http://mymsaa.org/PDFs/MSAA_2013-06_audit.pdf">Link to MSAA Audit

What We Do

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis. MSAA provides ongoing support and direct services to individuals with MS and their families. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles.

Programs and services provided by MSAA include:

National toll-free information and support Helpline (800-532-7667)
Compassionate and responsive consultation with MS clients and their families
Equipment Distribution Program (wheelchairs, walkers, scooters, etc.) for those who are physically challenged
Cooling Assistance Program to provide relief for heat-sensitive individuals
Barrier-free housing for physically disabled adults who wish to remain independent
Funding of diagnostic MRIs for those who have been denied insurance coverage
Insurance advocacy and financial assistance to individuals in need of follow-up MRI exams through the MSAA MRI Institute
Educational literature on topics ranging from medical research and treatments to managing symptoms and coping with MS
Free lending library of books and materials on topics related to multiple sclerosis
Awareness events including conferences with educational workshops, guest speakers, and information on helpful products and services

Multiple sclerosis – a disease with no known cause, cure, or prevention – is the most common neurological disorder of young adults. Many of the estimated 350,000 individuals with MS are diagnosed between the ages of 15 and 50. Women are twice as likely as men to develop MS.

Since 1970, MSAA’s philosophy and efforts have focused on improving the quality of day-to-day life for people with MS and their families. MSAA relies heavily on volunteer efforts and the ongoing support of the general public.

MSAA invites everyone in the community to join our cause – working together to break down barriers (physical, emotional, and social) and build up hope for those who are physically challenged.

Last Updated on Thursday, 24 April 2014 13:40