Best Group Ever, Best Rules Ever
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To keep our group being the Best Group Ever we must have the Best Rules Ever. By being a part of this group, you are committing to doing your part to keep this the Best Group Ever. This is your group too and we hope that you take pride in being a part of this community. We welcome any input on these rules at any time.
Questions - We realize people will have lots of questions especially when newly diagnosed, please take a minute to search in the group to see if you can find a previous conversation that can answer your question or to bump up the conversation.
Introductions - Everyone’s comfort level may be different, but we really like to see introduction post. Our community has a great welcome brigade.
Information & Resources - It is very helpful to see new information and resources, but please try to provide details and references about the subject and whether it was given or supported by a specific type of professional or specific organization.
Experiences & Accomplishments - It is great hearing about experiences and accomplishments, but some statements can be confusing on whether certain details are beliefs, opinions or come from some form of resource. Please state when something is a belief or an opinion and provide a reference if it comes from some resource.
Treat everyone with respect, we are all here for similar reasons but come with different views and experiences.
Advice should be stated as what worked for you or what they might investigate and should not be state as something that should be done.
Watch how you post or comment so that it doesn’t come across as abrupt, snappy or shouty. Examples; all capitals, multiple exclamation or question marks.
Use the “Report to Admin” feature in the upper right corner of each post, when concerned about a specific post.
Private message or email admin about specific situations that may be of concern that can’t be done through the “Report to Admin” feature.
Reserve tagging admin as you would anyone else personally. Examples; to answer questions that may benefit the group, bring attention to something they can relate to or something they can help with.
Treat all personal information as confidential unless you have gained specific agreement otherwise.
English is a prominent language in our group, but it is not everyone’s first language so details and understanding can get lost in translation.
How you interpret someone’s word may not be what was intended.
If you are given medical advice from anyone it should be followed up with your medical provider.
Admins are volunteer parents and may not have the ability to immediately respond to a specific request.
Admins are not medical experts and may not be able to answer all questions.
Personal attacks or disrespectful comments will not be tolerated. If an admin is concerned about posts or comments they reserve the right to take specific actions to remedy the situation. The specific action taken depends on the circumstance.
This group is not the place to bring up topics for debate. Only use genuine questions and answers on highly controversial topics.
Soliciting, Advertising and Fundraising for personal gain is not permitted. However; information, resources and experience are permitted and sometimes could easily be considered in the not permitted category. If that is the case be sure to include how it relates to our community.
Our group members are made up of Family, Friends & Professionals who work with or research our kids with DYRK1A Syndrome or sometimes suspected to have.
We do our best to screen individuals coming into our group. We ask three questions before approving their request to join the group. One of those questions asks if they are connected to a current family in the group and if so who. We will then contact that family and ask if they would like that specific person to join the group.
We will also accept members that have been added by the primary family members (Parents or Guardians). If someone else adds a member we will ask the primary family member before approving the request.
The goal is to keep the group a safe and comfortable place to give and receive support and information. These steps will not always prevent unwanted person from joining. If you have concerns about the presence of an individual in the group, please contact the admin.