Privacy Policy & Terms of Use

MSAA Terms & Conditions

Web Terms and Conditions

The Multiple Sclerosis Association of America is a nonprofit organization and a leading resource for the entire MS community, improving lives today through vital services and support. 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 content 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 from 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 Site 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.

Email Privacy

MSAA respects the privacy of its members and the confidential nature of all personal information. We have not, and do not, disclose any personal information – including email address – to any third parties without your expressed consent.

Mobile and Text Messaging

Text messaging originator opt-in data and consent will not be shared with any third parties unless required by law.

Submissions and the MSAA Blog

MSAA invites and encourages you to use the MSAA Blog, and other communication services of the Site designed to allow you to communicate with the Internet community and 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. You 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 your 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, John Masino, 375 Kings Highway North, Suite B, Cherry Hill, NJ 08034, 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.

Our site uses cookies to identify end users based on their visit to our website(s) and/or other sites on the Internet. We also use cookies to analyze website traffic and performance.

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.

Individual site visitors who wish to review their personal information gathered by MSAA, request corrections, or inform MSAA that he/she does not wish his/her personal information to be shared outside the organization can contact the MSAA Communications department at CommDept@mymsaa.org.

Data Use

MSAA collects contact and other information from website visitors only when they have voluntarily provided these details to MSAA. While on MSAA’s website, individuals may provide their information by registering as a website user, registering for an event, completing a survey, sending an email inquiry to MSAA, making an online contribution, contributing to a participant in an event online, and through other online activities. MSAA generally responds to requests via United States Postal Service mail, email, or telephone, depending on the type of request received.

This site uses an SSL (Secure Sockets Layer) as our generally-accepted standard security technology for encrypting information submitted via online forms of all types (donations, registrations, surveys, and any other transactions that include personally identifiable information) before being transmitted. This certificate-verified encryption is in place to make it difficult for unauthorized entities to view submitted information traveling between computers or devices.

Our site collects data related to targeted advertising and the behavior demonstrated by end users on advertiser websites. Data is converted into obfuscated audience lists from which individual identities cannot be determined by Third-Party vendors. Specifically, collected data is cookie data, which our/the DSP platforms processes, creating audiences and attributing actions to specific ad campaigns. Data is stored in vetted third-party platforms, which facilitate the collection of this data through secured tags. These platforms all conform to necessary data privacy laws, and allow for the exercising of all rights of data subjects. Lastly, platforms that allow for user-level tracking do so only through data gathered with proper consent, and obscure any form of user identification.

Information collected from MSAA’s website may be used to contact individuals regarding topics of importance to the MS community. For instance, people may be contacted via mail, email, or phone (as mentioned above) to be informed of breaking MS news, local and regional events, programs and services that may be of benefit, requests to share information through surveys, and to inform individuals when vital information is published. Additionally, fundraising and contribution opportunities are also communicated to enable those registered with MSAA to help support MSAA’s critical mission of Improving Lives Today.

Please note that individuals may opt to have their personal information removed at any time. To do so, please email unsubscribe@mymsaa.org.

MSAA uses vendor Classy for online constituent record management and transaction data. Classy and other related services are PCI DSS compliant. Classy has implemented PCI standards regarding secure storage of data, strong access control, and other requirements. For more details, please visit https://www.classy.org/why-classy/security/.

Online Platforms/Third Party Information

MSAA may permit third party sites to use non-personally identifiable information as a way to target advertisements to you that are pertinent to your interests. Additionally, connecting social media accounts to an MSAA Online Platform may allow us to collect public information that is shared on your social media accounts.

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 MSAA and in some way represent MSAA’s mission to be a leading resource for the entire MS community, improving lives today through vital services and support. 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 http://www.afpnet.org/files/contentdocuments/donor_bill_of_rights.pdf.

Donor Bill of Rights

As Published by the Association of Fundraising Professionals at www.afpnet.org/files/contentdocuments/donor_bill_of_rights.pdf

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 146 or through email at donorrelations@mymsaa.org.

Joint Cost Allocations

Founded in 1970, the Multiple Sclerosis Association of America (MSAA) is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners. MSAA communicates with the MS community, our volunteers, donors, and prospective donors through channels including postal mail, phone, and digital platforms including email and social media to provide educational information and to request contributions to support MSAA’s free programs and services. In accordance with the Financial Accounting Standards Board (FASB) guidelines, MSAA allocates a portion of our fundraising expenses to programs and services.

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.

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. MSAA determines all editorial content on the Site and does not recommend or endorse any specific treatment or medication; no external company has any influence on the editorial content. All medical and treatment information is reviewed, edited, and approved by MSAA’s chief medical officer to ensure medical accuracy. MSAA adheres to a strict policy of providing unbiased information pertaining to all treatment options.

Specific grant or sponsored sections of MSAA’s website are included below:

MSAA Tax Returns

MSAA Audit

Sources of Information

MSAA consults several accredited resources for the information appearing on mymsaa.org. These include:

  • Articles from peer-reviewed medical journals through PubMed (of the United States National Library of Medicine, National Institutes of Health)
  • Announcements from the United States Food and Drug Administration (FDA)
  • Peer-reviewed papers and presentations given at the annual national and international MS/Neurology conferences, including those hosted and overseen by the American Academy of Neurology (AAN), the Consortium of Multiple Sclerosis Centers (CMSC), the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), and the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS)
  • Study information from www.clinicaltrials.gov
  • If information is obtained elsewhere, for example through a recognized national or international news service, or through a pharmaceutical company, the source is specified within the writing

In addition, all of MSAA’s medical information is:

  • Written by top experts in the field, with their credentials specified on each writing, and/or experienced and qualified professional medical writers
  • Reviewed for accuracy and edited by MSAA’s Chief Medical Officer, currently Dr. Barry A. Hendin. His bio is as follows: Barry A. Hendin, MD, is a highly accomplished neurologist who specializes in MS. He is the chief medical officer for the Multiple Sclerosis Association of America (MSAA) and has spoken at several of MSAA’s educational programs. After 45 years as a neurologist with Phoenix Neurological Associates, Ltd., Dr. Hendin is now director of the Arizona Integrated Neurology MS Center. He also holds the position of director of the Multiple Sclerosis Clinic at Banner University Medical Center and is a clinical professor of neurology at the University of Arizona Medical School. Dr. Hendin earned his undergraduate degree at Washington University and his Medical Doctorate (MD) degree at Washington University Medical School. To date, he has had more than 15 clinical appointments to various medical facilities – many of which were at the Good Samaritan Hospital, where he served as chief of neurology for 35 years. He has had seven academic appointments, largely at Washington University Medical School and Arizona Medical School. Dr. Hendin has also been appointed to nearly 30 councils, committees, board of directors, and a task force, all in the fields of medicine, patient care, education, and research.
  • Some information is also reviewed by MSAA’s Healthcare Advisory Council, currently made up of the following MS experts:
    • Carrie M. Hersh, DO, MSc, FAAN (Chairperson)
    • Kara Barton, LCSW
    • Kimberly Castelo, MS
    • Heidi Crayton, MD
    • Alison Daigle, MD
    • Leorah Freeman, MD, PhD
    • Kim Freiburg, BSN, RN
    • Evelyn Hunter, PhD
    • Yasir Jassam, MD, MBChB, MRCP(UK) FAAN
    • Dorlan Kimbrough, MD Jong-Mi Lee, NP
    • Leo Maher, MD
    • Shaina Meyer, OTR/L, MSCS
    • Augusto Miravalle, MD
    • Annette Okai, MD
    • Sara Qureshi, MD
    • Rebecca Rahn, PA
    • Kottil Rammohan, MD
    • Mandy Rohrig, PT, DPT
    • Kyle Smoot, MD
    • Amy Sullivan, PsyD, ABPP
    • Yolanda Wheeler, PhD, CRNP
  • When appropriate, a full listing of specific resources is provided in the article or publication. MSAA’s What’s New in MS Research articles are examples of this type of writing where a full list of resources is given.

Editorial Sources

MSAA produces a vast amount of content, including information about MS symptoms, treatments, research, wellness, and a variety of other vital and relevant topics. MSAA publishes online articles, booklets, a bimonthly eNewsletter, a biannual national magazine, and other materials, all of which note the names of the authors, reviewers, and editors, as well as the resources consulted.

As noted earlier, all medical information is reviewed by MSAA’s Chief Medical Officer, Barry A. Hendin, MD. Resources for medical information include peer-reviewed articles, often accessed through PubMed (United States National Library of Medicine, National Institutes of Health) as well as information from the United States Food and Drug Administration (FDA). Abstracts and presentations from national and international MS conferences are also consulted and cited for MSAA’s updates for the MS community.

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

Presenter’s names and credentials are mentioned within each video or webinar, either verbally or via a graphic on the screen, as well as next to each video.

What We Do

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and a leading resource for the entire MS community, improving lives today through vital services and support. 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 and emotional obstacles.

MSAA’s free programs and services include:

  • National toll-free information and support Helpline at (800) 532-7667, extension 154, via email at MSquestions@mymsaa.org and through our online Chat feature
  • Equipment Distribution Program – mobility and safety equipment
  • Cooling Program – accessories to provide relief for heat-sensitive individuals
  • MRI Access Program – funding to assist individuals who are uninsured, under-insured, or financially unable to pay for a magnetic resonance imaging
  • Educational Programs – opportunity for members of the MS community to connect and gain knowledge from the country’s leading MS healthcare professionals
  • My MS Manager™ mobile app – mobile phone app for individuals with multiple sclerosis or their care partner to use on their iPhone, iPad, iPod touch or Android mobile phone device; a convenient and effective tool to manage the ever-changing course of the disease.
  • Educational Literature – publications and articles on topics ranging from medical research and treatments to managing symptoms and coping with MS
  • MS Conversations blog
  • My MS Journey
  • MSAA Podcast – episodes covering a range of topics

In addition, MSAA offers many digital tools including:

  • MSAA’s Ultimate MS Treatment Guide – online tool to help compare all FDA-approved MS treatments”
  • My MS Manager™ mobile app – mobile phone app for individuals with multiple sclerosis or their care partner to use on their Apple or Android mobile phone device; a convenient and effective tool to manage the ever-changing course of the disease.

Multiple sclerosis – a disease with no known cause, cure, or prevention – is the most common neurological disorder of young adults. Many of the nearly one million individuals with MS in the United States are diagnosed between the ages of 15 and 50. Women are three times as likely as men to develop MS.

Since 1970, MSAA’s philosophy and efforts have focused on Improving Lives Today 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 mission – working together to Improve Lives Today!