This forum is an online community for people living with or affected by MND to share experiences and support one another. It is also a safe place where people who are experiencing symptoms or awaiting diagnosis can ask questions and express their concerns.

All we ask is that the conversation remains relevant to MND and to the issues raised.

The guidelines

It is important to us that the forum remains a safe, supportive and open environment, and in order to do so we have developed a set of community guidelines which we require all forum users to follow.

Please read them below carefully. If you do not agree, please do not join or use the Forum.

The full Forum Terms and Conditions can be found here.

Our privacy policy can be found here.

Respect each other and celebrate differences

We welcome all to the forum – regardless of race, gender, age, sexual orientation, marital status, religious or philosophical belief, nationality and disability. We ask that all members treat each other as equals and respect each other’s life choices and beliefs.

No one member owns or controls the forum, or the content posted. No one member is more entitled to be on the forum than another, regardless of how long they have been a member or how long MND has affected their lives.

Be kind

As you can imagine, people on this forum are dealing with a difficult time in their lives. Give each other the space to share their thoughts and be kind. Share your views and opinions in a polite and respectful way.

Be nice to new members – it can be nerve wracking joining a forum and writing a post for the first time.

Remember, sometimes the written word can be taken out of context due to the lack of expression you would normally get from the spoken word. Pause for thought before replying to a post and reread the post later – the intention may be clearer after you’ve had some time to reflect.

Everyone has different levels of humour or expression. Sometimes it is best not to engage in a post or a thread that is not to your liking rather than post or comment expressing your disdain for what is being discussed.

Be safe

Do not share personal information on the forum as it is a public space. Avoid including your address, telephone number, email or your full name in any posts or private messages.

On registration you will create a username and password to access your account. We recommend creating a username completely different to your given name, such as a nickname. Be sure to treat this information as confidential and do not share it with other members.

We will do our best to identify any spam accounts before they register but sometimes they can slip through. Be extra careful about engaging with accounts that look suspicious and report them to us immediately.

The Forum is not a substitute for professional advice, nor is a member qualified to provide medical advice, regardless of their experience or expertise. You should consult your doctor, or other relevant professional, before making any decisions that could affect you or others.

Be legal

It is best to keep all posts and opinions your own – do not adapt or copy from any articles, posts or comments you have seen elsewhere and use them as your own as this could be a breach of copyright and/or intellectual property.

Likewise, you must treat all posts made by other members as confidential. Other members posts or comments should not be shared by you without prior consent from the member in question.

The forum should never be used for commercial purposes. For instance, posting an advert for a second-hand wheelchair for a private sale is acceptable but sharing links to websites or businesses is not permitted.

How you help

Be prepared that some people may disagree with you, the information you share or points you make. This should not be taken personally.

If you feel unhappy with something someone has said and want to raise it, then consider contacting them directly in a calm manner to explain how the post made you feel. Issues and disagreements can usually be resolved quickly when discussed one to one.

If you feel like someone has posted something that goes against these guidelines or our terms and conditions, you can report them via the forum using the report button at the bottom of the post, or by emailing [email protected]. Once reported, it is best practice to ignore the post until the matter is resolved. Further engagement may provoke reactions that lead to further dispute.

When you contact us, you should expect a response within 3 working days.

How we help

The forum is moderated by MND Association staff Monday to Friday 9:00am to 5:30pm. The forum is moderated by MND Association staff on a best endeavours basis.

We like to step back from the forum and let members have some management and control over the forum content. We do not approve every post before it goes out. However, if we feel our guidelines and rules have been breached, we may intervene in a number of ways:

• Edit a post to remove words or sentences
• Delete a post completely
• Post a comment or statement to assist a situation or explain the Associations position on a matter.
• Contact a user in a private message or email to suggest a resolution or issue a warning.

Only when these options have been exhausted would we issue a temporary ban, then as a last resort, a permanent ban.

We may also close a thread if we feel the discussion has become too heated and is igniting an unhealthy debate, or if we feel members are attacking or insulting one another.

Research

You must not use data from the forum to gather information for surveys and research studies, or similar, unless prior permission has been given by the MND Association. For permission, you must contact [email protected] detailing your criteria and provide proof of ethical approval.

Connect

The Ask MND Connect thread is a dedicated area for members of the forum to ask questions about motor neurone disease to the MND Connect team. Whilst the team aim to respond as soon as possible, this area is monitored between the hours of 9am and 5pm, Monday to Friday. Posts added outside of these times will be acknowledged at the next available opportunity.

Connect can also be contacted directly by telephone 0808 802 6262 and email [email protected]

MND Connect may reply to a post within the thread. Alternatively, if it is deemed more suitable, the team may contact the member via private message.