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How to post information about your group:
Step 1 – Request that we Setup Access to this site (OR Update your basic data)
Send us an email at tech@pnsnetwork.org with the basic information described below. If you have problems or need assistance with this process, send an email to that same address. If you are already setup, but need to change this basic information, simply send us another email with the updated data. We use group name and posting email address to identify you. NOTE: We plan to add a data entry form to use instead of just using an email. However, we request that you still send us an email to alert us that you are requesting a setup or change.
- Is this a request to setup a listing for a new group or is it an update to a group that we already have?
- Name of your group
- “posting email address” – the one you will use to send messages to us with the information you want to post. The software we use will only process messages from your designated “posting email address”. It can be changed, if necessary, but at any given time only one email address per group is recognized. This is a limitation of the software tool we are using. If blank, we will use your contact email address (described below). Ordinarily, we will use the “posting email address” to contact you.
- Meeting Method: virtual, in-person, or hybrid. Virtual may mean Zoom, but there are other methods. Hybrid means that some participants are meeting in-person while virtual participation is supported.
- Membership: (1) open to anyone, (2) closed – perhaps temporarily, (3) Ask to join– some groups, especially virtual ones, can be maxed out and possible participants need to ask permission to join, (4) restricted – such as to members of a housing facility or those with a specific condition. If not open to anyone, please explain.
- Special Focus: Most groups have no special focus and would leave this as “none”. Indicate if your group tends to focus on particular aspects of PN, such as exercise, research, advocacy, pain relief, or a specific cause such as cancer or a rare form of PN, let us know.
- Location: If it is an in-person or hybrid group, or an online group that you eventually hope to become in-person or hybrid, provide location information, such as city, state, region or country. Participants sometimes refer to their local service providers or doctors and those references are most useful to other groups members from that location.
- Language: If the dominant language is other than English, please tell us what language you will be using. Note: currently we only have English-speaking editors. If a post is to be in some other language, we may need help finding someone to review the content.
- Accommodations: If you have made special provisions for hearing or visually handicapped people, such as closed captioning on video or a sign language helper, please let us know.
- A “username”: Everything your group posts is identified by this username so it can be easily found. If blank, we will generate a username.
- Your Contact Email address. If you are already on our mailing list, we would prefer that you give us that email address so we recognize you. It can be the same or different from the posting email address. You might want to use a different one if several different team members share access to the posting email address to submit information to be posted.
- Optionally, (but strongly recommended) backup email addresses and phone number(s) that we can use in case we need to quickly contact you about something you have sent in to be posted. ALSO, If the latest information we have (such as a post) is too old (such as older than a year) we will attempt to contact you using your contact email address and any information you provide in this field. Groups for which we cannot get confirmation as being still active will be marked publicly as out-of-date and (eventually) deleted from normal public view on this website.
- Optionally, (but strongly recommended) the “author name” that will show on your published posts. This could include your name and names of any other volunteers working with you on this. If blank, your posts and pages will (at least initially) be marked as being authored by your group name. This author name can be updated later.
- Optionally, your first post – any information you want to post about your group, such as meeting times or dates or your public contact data. Such as the information currently displayed on the website of the Foundation for Peripheral Neuropathy. For security reasons this first post is limited to text.
NOTES for Step 1:
IF YOU MANAGE MULTIPLE GROUPS OR MEETINGS and IF you want to post information about group each separately, give us all the data items about each group or meeting. The data for each group will be posted under a different “username“, so each group must use a different posting email address (this is an unfortunate limitation of the software tool we are using).
Your “posting email address” will be associated with your username and your user account. Mail sent from that address to a special address (that we will provide to you) will be converted to posts that the public can see. Your “posting email address” can be changed, (either by us or by you logging into this site). Ordinarily, we will “reply all” to send emails back to you if we have questions, so it is a good idea (but not required) to include your contact email address as a CC on messages you send in.
We will set an initial password for your username. Later, if you want, you can log into the site and change that password. In the simplest case you may never need to log in to our site and may not care what the password is. But, over time, you (or someone helping you) may want to learn how to do more, such as directly making updates to posts.
Step 2 – We will send you an email and ask that you visit the website and either confirm what it shows or suggest changes.
The email to you will contain the following:
- Your password and login information
- A link to a draft page showing you what your listing will look like on the News home page
- A request that you confirm that the draft listing is correct.
You will confirm or engage in an email or phone conversation to fix any problems.
When that is done, we will send you an email that gives you the “special email address” to use to send in posts about your group. We expect that normally you will simply include this “special email address” as a blind copy address on emails you send to your group members.
Step 3 – you send us your first post.
This is pretty simple – just send us an email with information about your group. Send it to the “special email address” we provided you. This can just be done by including the “special email address” on emails you send to your group members. Or you can send something special.
On occasion we may need to change the “special email address”. If that happens we will send notifications to all of the email addresses that you provided to us.
- By default, there is only one post for each group and the message you send will be used to replace the previous version of that post.
- If your message starts with KEEP we will add a post and not delete any other post from you. If they are out of date, it is your responsibility to contact us to delete such posts (and possibly send a replacement) or log in and delete or edit them yourself.
- If your message starts with KEEP UNTIL and a date, we will add a post and not delete the old one. We will delete such posts when the date expires.
More flexible use of this system will require that you (or someone helping you) learn how to log into this site to do things like add additional posts or pages or edit their content. If there is a special occasion, contact us and we will try to help.
The messages you send can use bold, italic and colored fonts with various sizes and background colors. The software will attempt to create a post similar to the original email, though there will always be differences. With experimentation, it is possible to include photos and images.
Every incoming message will sit in a holding area until it can be processed. When it is processed it creates a “draft” post. Because of the way the software tool works, it is a good idea to visit the site 10 to 15 minutes after you send your message – the system only “wakes up” and looks for new messages to process when someone visits the site.
Your message will also be forwarded to one or more of out site editors. One will eventually examine it and switch the post from “draft” to “published”. (The word “eventually” is significant – do not wait until the last minute to submit time sensitive material.) If they notice a problem they will contact you. If there is a KEEP or KEEP UNTIL date, they will do what is necessary to honor that request. Or, you can log in and publish it yourself. We can teach you how.