The SMA News Today forums are designed for SMA patients, caregivers and medical professionals to connect, ask questions and share experiences.

Each of the main forums are public, so any posts in these can be seen by anyone. However, we’ve created three separate groups as an offshoot of the forums, two of which are private. There is a private group for SMA patients and another for SMA parents and caregivers. You must be a member of these groups to view and create posts. There is another group for medical professionals, which is public. Individualized descriptions of each forum and group are provided under their titles.

There is also a private message feature available to all users. If you’d like to message another group member or someone in a forum discussion, simply go to their profile and click the “private message” button.

SMA News Today Community Editor Kevin Schaefer will be moderating the forums, so please direct all questions to him. Thanks for joining the discussion here. Happy posting!

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SMA News Today Community Code of Conduct

Welcome to the SMA News Today Community!

The SMA News Today website, forums, and social media groups are here to provide a place for information and constructive discussion and feedback about living with Spinal Muscular Atrophy (SMA). These streams are for informational purposes.

While we strive to be a welcoming space and the rules are in place to keep the forums a supportive and meaningful place for everyone to visit and connect with other members of the SMA News Today community. Members and moderators of the forum can flag and report any posts which they feel are in violation of the rules below.

If you break the rules, you may find that your access is suspended or removed.

Please note, this forum is not a substitute for trained medical advice or treatment. If moderators suspect you are seeking medical advice or treatment, they will suggest that you contact your medical professional and recommend additional referral resources, if appropriate. SMA News Today is not responsible or liable for any advice given by other members of this forum.

  1. Please Respect Others.

The purpose of the forum is to provide a platform for the exchange of ideas. Occasionally, conflicts may arise when people voice opinions. Be courteous when disagreeing with others. Debating the opinion is appropriate, however criticism against the originator of the opinion is not allowed. Disrespect can be construed as flaming, trolling, harassing, profanity, abusive language or abbreviations, personal attacks, racial, religious, ethnic, sexual slurs, or similar behavior/language.

  • Flaming is defined as posts which are designed to personally berate or insult another. This includes accusations of scamming, bullying, etc. Please report this behavior directly to support.
  • Trolling is defined as deliberately posting derogatory, inflammatory comments/threads in order to bait other users into responding. Trolling or accusing someone of being a troll is also a form of trolling and is not permitted.
  • Posts similar to “Moderator Notified” or “Needs thread lock” are discouraged, as these types of posts are a form of trolling. If a thread is in violation of the forum rules, use the notify moderator button or send a private message to a moderator or administrator directly.
  • Personal attacks include, but are not limited to insulting a poster directly:

Example: “You are stupid, you suck, and you should [censored].”

The above are a just few examples of behavior that is not tolerated on the forums. Basically, play nice and get along. Thanks!

  1. No inappropriate talk. Remember, minors come here for information and support too!

We do not allow discussion that encourages or constitutes behavior that does not support a safe and comfortable environment for all users. The SMA News Today forum is not a place to chat about:

  • Illegal activities. The SMA News Today forums are not a place for discussing illegal activity, and you may not violate any local, state, federal, or international laws or regulations.
  • Topics or language that constitute bullying, vigilantism, engaging in any conduct or activity that is threatening, harmful, harassing, abusive, vulgar, hateful, defamatory, lewd, sexually explicit, inflammatory, profane, racially or ethnically objectionable, religious or political, or in any manner encourages inappropriate, disrespectful, abusive, or unlawful conduct or otherwise makes use of the forums an uncomfortable experience for anyone. This includes both clear and masked words, phrases, or images.
  • Discussions of topics that use graphic language, tone or images in terms of self-harm or violence to others are prohibited at the discretion of the moderators and/or administrators.
  • Comments that glorify or promote self-harm or suicide will not be allowed.

Some people are comfortable with all kinds of colorful language and images, others are not. We ask that our forum members remember to treat each other with courtesy and respect, and remember we do not all have the same expectations when it comes to what is acceptable.

  1. Please, no Profanity. Again, remember, minors visit this site too!

Thanks in advance for keeping the language on the forum clean and not profane. Intentional misspellings of swear words, using letter/symbol substitutions, or any other means to bypass our censoring are also not allowed. You will only get one warning for this, then you will be banned from the site.

  1. Never reveal your personal information, or anyone else’s.

The best way to stay safe online is to NEVER share your real name, phone number, address, email or passwords. Please do not disclose your, or anyone else’s, private information.

  1. Non-Constructive posts are prohibited.

Below is a non-exhaustive list of examples of non-constructive posts. As a rule, non-constructive posting is not permitted:

  • Spam – this is considered to be repetitive posting of the same topic or text or nonsensical posts that have no substance and are often designed to annoy other forum users.
  • Bumping posts in order to keep them near the top of the list is also prohibited. Likewise, the use of “/signed” posts are discouraged in that it doesn’t engender constructive discussion.
  • Do not create threads/posts to “petition” or “lobby” for features, additions, changes, or other issues. You may post suggestions and/or ideas to the boards, but you may not create a ‘petition’ for others to sign. This is bumping in disguise and will not be allowed. Lobbying is continually bringing up the same topic repeatedly in numerous different threads or as an off-topic post in official threads. This form of posting is not permitted.
  • Cross posting – As a courtesy to others before beginning a new thread, please look to see if an active thread on that topic has already been established using the Search feature. If so, place your comments there instead. Multiple threads on the same subject clutter up the forum needlessly and many good ideas may be lost. Use the Search link to keep discussions about one topic to one thread only.
  • Negative feedback can be very useful, provided that it is presented in a civil, factual manner. Tell us what you don’t like and why and how you feel it could be improved. Posts that are insulting and rude may be deleted, no matter how valid the ideas behind them may be.
  • A rant is a post which is long-winded, redundant and filled with angry, non-constructive comments. A free exchange of ideas is essential to building a strong sense of community and helpful in the development of the forums and site, but rants are disruptive and incite flaming and trolling. Please post your thoughts in a concise, clear manner and avoid going off on rambling tangents.
  • False obituary threads are considered highly improper, and knowingly posting false news of a user’s real-life death may result in a ban of both your forum account.
  • Threads that make threats or use other combative language are not allowed.
  • “Necro” posting – Please do not submit a reply to a thread that has been inactive for more than 45 days. Rather, create a new thread only if you believe that topic is still relevant to the community today. Sticky threads are exempt from this rule.
  1. Private communication between SMA News Today members, staff and forum users is not to be made public on these forums or by any other venue.

Please keep private conversations private. You are not permitted to publicize any private correspondence without permission. As such, warnings and bans are not to be discussed on the forum. Such matters shall remain private between SMA News Today and the user. Questions or comments concerning warnings and bans will be conveyed through e-mail or private messaging. Likewise, discussions regarding moderator actions are not permitted on the forum. If you have questions regarding a post or thread that has been removed or subject to other moderation, please contact a moderator to discuss it.

  1. Impersonating another forum user, moderator, volunteer, administrator or SMA News Today employee is prohibited.

Please do not impersonate anyone else. It might seem funny at the time, but it can lead to a lot of confusion.

  1. You may not post advertisements.

Advertising on these forums is prohibited. Please do not do it.

  1. No proxy posting; no account hopping to evade suspension.

Posting on behalf of a suspended user is not allowed. Working around a ban through other people’s accounts or secondary accounts to continue posting is also. You are personally responsible for your conduct on the forums. Threads designed to announce, appeal or contest a banning will also be removed without notice.

  1. No Legal Action threads.

Using the forums or PMs for encouraging, promoting, endorsing, or inciting any kind of legal action against anyone is strictly prohibited.

  1. User Generated Content.

We do not host screenshots, signature pictures, or other images on this message board. You are more than welcome to link to images hosted in other places, as long as they are of an appropriate and non-offensive nature and/or do not otherwise infringe the intellectual property rights of any party. Below is a list of examples of what is not permitted.

  • Images which are: sexually explicit, harmful, threatening, abusive, defamatory, obscene, hateful, racially or ethnically offensive; obscene or contain vulgar language; images that illustrate/show illegal activity.
  • Avatar icons are allowed as long as the images are below 20kb in size. Avatars that are disruptive or in SMA News Today’s sole discretion found to be in poor taste will be removed.
  • Links to images that are inappropriate will be removed and your forum account may be shut down.
  • Copyrighted, proprietary images, trade marks as well as images that do not belong to you (i.e. photographs or artwork which are used without permission of the creator) are also forbidden.
  • Signature Images are allowed, however they must be limited to 500 x 100 pixels AND less than 15kb
  • Advertising the sale of in items on the forums is prohibited. Selling anything for real money, be it digital items, services or physical products is not allowed.
  • Do not complain about getting banned, and do not make another account to circumvent a ban. Do not complain about other users being banned, in the forums or on profile pages of other users.
  • Do not complain if a moderator removes a message you posted. We trust our moderators, and if they’ve removed a message, they had a good reason.

Community Managers, Moderators & other SMA News Today Staff

The most frequent staff members you will see posting on the forums are the community managers and moderators. We enforce the Code of Conduct and respond to threads and posts, whether it is to address an issue or simply having fun.

If you don’t see us responding, it isn’t because we are ignoring you. Sometimes we don’t have a good answer, or we are looking for an answer or we cannot comment on the issue at the time.

We also have other work we have to do that isn’t on the forums so if you don’t see us around, we are working on something else for you!

  1. Zero Tolerance Policy.

Immediate suspension or bans from the forum can result from any of the following: the posting of pornography; discriminatory remarks which are sexually explicit, harmful, threatening, abusive, defamatory, obscene, hateful, racially or ethnically offensive; excessive obscene or vulgar language; posts which discuss or illustrate illegal activity; providing links to sites that contain any of the aforementioned.

  1. Proprietary forums.

The SMA News Today Community is a private message forum. All message board content is allowed at the discretion of SMA News Today and its parent company, BioNews Services, LLC. SMA News Today reserves the right to remove any message board content at will without notice for any reason.

  1. Changes to these Rules and Regulations

Spacetime Studios may revise these Rules and Regulations at any time by amending this page. You are expected to check this page from time to time to take notice of any changes.

For breaking above rules you may be warned/banned appropriately!

Small print

The SMA News Today forums are a private message forum administered by SMA News Today and its parent company, BioNews Services, LLC. SMA News Today reserves the right to edit or remove any message board post or other content at will without notice for any reason. Posting privileges are provided as a courtesy that can be rescinded at any time, at our sole discretion. By using the forums, you agree that SMA News Today has a royalty-free, worldwide license to your posted text, graphics or other content for its business purposes.

You must have an active account to post on the SMA News Today forums. Your forum account is linked to your email. You are responsible for adhering to the forum rules of conduct. If your forum posting privileges are suspended or banned, your account will be reviewed and may be subject to further action. SMA News Today reserves the right to suspend your access to these forums at any time for reasons that include, but are not limited to, your failure to abide by this Code of Conduct.

SMA News Today and its Community Team reserve the right to evaluate each incident on a case by case basis, and have full discretion when addressing any behavior that they determine is inappropriate. Any finalized decision may be based on the offending posters full history on the SMA News Today forums, as applicable. Should you wish to discuss any disciplinary measures against your account or report a violation, you can email: [email protected]

Thank you for taking the time to read the Code of Conduct! The SMA News Today forums should always be treated as environments where everyone can feel comfortable. These rules are intended to be a set of guidelines that help create and maintain those environments, not a definitive list of every eventuality we may need to take action on.

If you’re unsure how these guidelines affect you, please PM a moderator or email any questions to: [email protected]

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