Help Home
Below are answers to many of the most frequently asked questions about using the PPMD Community website. If you cannot find what you’re looking for, or if you have suggestions for new Help topics, please contact the PPMD Community website administrator at community@parentprojectmd.org
About the PPMD Community
What is the purpose of the PPMD Community website?
Who can view or join the PPMD Community?
How do I invite others to join the PPMD Community?
Can I promote the PPMD Community on another website?
My Page and Settings
How do I set up my page on the PPMD Community?
How do I change my password, profile photo, or other information?
How do I view or change my privacy settings?
Can I control when I receive email notifications?
Can I change how photos, videos, blogs, and latest activity are displayed on my page?
How do I change the colors or appearance of my page?
What else can I add to my page?
Members, Friends, and Messages
How do I find or meet other PPMD Community members?
What is the difference between comments and messages?
How do I send a message to another PPMD Community member?
How do I check my messages?
What are friends and what can a friend do that other members cannot?
How do I send and accept friend requests?
Can I remove someone as a friend?
Can I prevent a member from sending me messages or friend requests?
Searching the Site
How do I search the PPMD Community website for a specific topic?
Discussions
What are discussions?
How do I participate in or create a new discussion?
Groups
What are groups for?
How do I join or create a group?
Photos, Videos, and Blogs
How do I add photos to my page?
How do I add videos to my page?
What are tags and why should I add them?
How do I view or manage my photos?
How do I view or manage my videos?
What are blogs and how do I create one?
How do I view or manage entries in my blog?
Who else can see and comment on my photos, videos, and blog?
Events
What are events for?
How do I RSVP or create a new event?
About the PPMD Community
What is the purpose of the PPMD Community website?
The PPMD Community website is as a place to meet and share experiences with other parents and friends of individuals with Duchenne. More than just an online message board, the PPMD Community provides many ways to connect: by sharing favorite photos and videos, expressing thoughts and emotions in personal blogs and messages, exchanging information and support resources through discussions and groups, and advancing research and advocacy with special events. All these aspects enable members to create lasting and meaningful relationships within the PPMD Community.
The PPMD Community website exists as a counterpart to the main PPMD website, www.parentprojectmd.org, where you can still find authoritative news and information on the latest advances toward ending Duchenne.
Who can view or join the PPMD Community website?Only the homepage of the PPMD Community is visible to non-members, but anyone can join and become a member of the PPMD Community. To join, simply click the "Sign Up" link on the right side of the homepage. You’ll be asked to enter your email address and create a password that you will use every time you to log in to the Community. Remember, the login for the PPMD Community is separate from the one you may have created on the main PPMD website.
How do I invite others to join the PPMD Community?Once you are a member, you can invite others to join the PPMD Community too. To send an invitation, click on the Invite tab in the upper-right end of the green bar at the top of the page. Type in the email addresses of the individuals you wish to invite (separated by commas), add a personal message if you like, and click Send Invitations. You can also import email addresses directly from your personal address book or other email accounts (like on AOL or Yahoo!). Just follow the prompts on the page.
Can I promote the PPMD Community on another website?Yes, the more people we have on the PPMD community, the better. You can help raise awareness about Duchenne and PPMD by promoting the PPMD Community on other websites, blogs, or social networks (Facebook, MySpace, etc.). Here are a few ways to do this:
1. Post a link to the PPMD Community on your site. Here is the HTML code to add:
<a href="http://community.parentprojectmd.org">PPMD Community</a>
2. Post a customized badge, including embeddable photo or video players:
Badges are special graphic links you can post on other websites that let visitors know about your membership in the PPMD Community. Clicking on the badge will take them directly to the PPMD Community website. Click here to get a PPMD Community badge. Pick from a series of badges, including ones that feature photos or videos (your own or from the entire PPMD Community), copy the “HTML Embed Code”, and paste it in the appropriate area of the website, blog, or social network where you wish to post it.
3. Pull in content from RSS feeds:
Posting an RSS feed is a great way to show constantly-updating news on recent activity or content from the PPMD Community. RSS feeds are generated for individual members’ blogs, photo streams, and recent activity, as well as for the entire community’s activity and photo stream. Once you’ve decided which RSS feed you’d like to promote, just click on the corresponding orange RSS link to get the feed’s URL.
Not sure what an RSS feed is? Watch this video.
My Page and Settings
How do I set up my page on the PPMD Community?
When you first sign up to join the PPMD Community, you will be asked to provide a profile photo and answer a set of profile questions. This is all you need to do to set up your page, but you can customize your profile by adding photos, videos, blog entries, or other information. You can also customize the colors and appearance of your page.
How do I change my password, profile photo, or other information?You can change your account or profile information at any time. Simply click on the My Settings link on the right side of the page. From here, you can select any of the following:
Account: Modify your name, password, profile photo, or personal information.
About Me: Change your responses to the profile questions that appear on your page.
Privacy: Adjust your privacy settings, including who can view your profile and send you messages.
Email: Choose what activity will send you email notifications.
You can change your default privacy settings at any time. Simply click on the My Settings link on the right side of the page and select the Privacy tab. Choose an option for each setting and click Save button to update.
Can I control when I receive email notifications?Yes, you can change your email notification preferences at any time. Simply click on the My Settings link on the right side of the page and select the Email tab. Choose an option for each setting and click Save button to update.
Can I change how photos, videos, blogs, and latest activity are displayed on my page?Yes, you can select from a number of display options for the different sections of your page. Simply click the Edit button in the upper right of each section to see your options. For instance, you’ll be able to choose how many events are displayed in your latest activity, whether your photos are shown as a slideshow, thumbnails, or albums, or whether comments on your wall must be approved or if they are posted immediately. Once you have selected the settings you want, click Save button to apply the changes.
How do I change the colors or appearance of my page?You can customize the colors and display theme for your page on the PPMD Community at any time. On your page, click the Theme link below your profile photo. Select a theme style you like, customize colors and fonts, add any custom code you wish, and click the Save button to make the changes.
If you decide that you want to change your page back to the standard PPMD Community display theme, simply click on the Theme link, choose the “Apply PPMD Community’s Theme” button and click Save.
What else can I add to my page?Your page includes a customizable box below your profile that you can use to display text, links to your favorite sites, photos, videos, or widgets. This is another way to make your page unique. Click the Edit button to add content or HTML code to this box, and click Save to update.
You can also add an RSS news feed from another blog or website on the left side of your page. Click the Edit button in the header of the RSS box to specify a feed to display. You can change the title shown in the header of the section to reflect the subject of the feed, type in the URL of the feed, change the display to detail view or titles only, and change the number of items appearing in this box from 0 to 10.
Members, Friends, and Messages
How do I find or meet other PPMD Community members?
To view all the members of the PPMD Community, click on the Members tab in the green bar. You can search for members by name, or sort them by alphabetical order or by how recently they’ve joined the Community. Note that you may need to scroll through multiple pages in order to view all the PPMD Community members. To view a member’s profile page and learn more about them, simply click on the member’s name or photo.
For quick searches, there is also a member search box on the right side of every page.
What is the difference between comments and messages?To contact other PPMD Community members, you have the option to leave a comment on their page or send them a message. Comments can be seen by all members of the PPMD Community, and remain on that member’s profile page unless they delete them. Messages are private, and are sent to the member’s PPMD Community mailbox. You can only send messages to Community members who have confirmed you as a friend.
To leave a comment on another member’s page, scroll down to their comment wall, type your message, and add any photos, links, or other content you wish to include. When you are ready to post the comment, click Add Comment.
To send a message to another member, go to their page and select the Send a Message link below their profile photo. A box will appear in the panel at the top of the page. Type your message, choose whether or not you would like to save a copy, and click Send.
How do I send a message to another PPMD Community member?Sending messages is a way you can communicate privately with another PPMD Community member. You can only send messages to those members who have confirmed you as a friend.
To send a message to another member, go to their page and select the Send a Message link below their profile photo. A box will appear in the panel at the top of the page. Type your message, choose whether or not you would like to save a copy, and click Send.
How do I check my messages?To check your messages on the PPMD Community, click the envelope icon located in the blue section at the very top left of the page. A panel will drop down allowing you to compose messages and read messages you’ve received.
What are friends and what can a friend do that other members cannot?Friends are members of the PPMD Community network that you’ve chosen to receive special access to your posted content. Your friends can also send you private messages through the PPMD Community. Additionally, you can set your content (videos, photos, blog posts) to be viewed by “Friends Only.” You can share content with them by email, or invite them to groups.
How do I send and accept friend requests?To send a friend request to another PPMD Community member, go to their page and click the Add as friend link below their profile photo. The Community will send a friend request message for the member to confirm. Once s/he accepts your request, the member’s photo will appear in the Friends area of your page. You will then be able to send private messages, and will have access to one another’s content marked "Friends Only."
To view your friend requests, click on the small person-shaped icon in the blue section at the very top left of the page. A panel will drop down allowing you to see your current friends as well as friend requests you’ve sent and received, and any members you have blocked. Once you accept a friend request, the member’s photo will appear in the Friends area of your page. You will then be able to send private messages, and will have access to one another’s content marked "Friends Only."
Can I remove someone as a friend?If you decide you no longer wish to include a member as your friend, go to their page and select the Remove as friend link below their profile photo. They will no longer have access to your content marked Friends Only, or be able to send you private messages.
Can I prevent a member from sending me messages or friend requests?If you don’t want to receive messages or friend requests from someone, you can block them. To do this, click on the person-shaped Friends icon in the blue section at the very top left of the page. Click on the photo of the person you wish to block, and choose the “Block messages from this user” link below their photo. The member will no longer be able to send you messages or friend requests.
If you are being spammed or harassed by another member of the PPMD Community, please contact us immediately at community@parentprojectmd.org. This type of behavior is grounds for removal from the PPMD Community network.
Searching the Site
How do I search the PPMD Community website for a specific topic?
To search the PPMD Community website, enter your search keywords in the search box in the blue bar at the top right of the page. The search results will include any discussions, groups, events, member profiles, photo or video tags, blogs, or comments that match the term entered.
Discussions
What are discussions?
Discussions are the heart of the PPMD Community website, enabling members to exchange thoughts and information on a number of topics. To view discussions, click on the Discussion Forum tab in the green bar. You’ll see that all discussion threads are organized under categories, making it easier to find the specific topic you’re looking for. You can click on any category title to view all discussions within that category, or you can click on a specific discussion title to view all posts within that thread.
How do I participate in or create a new discussion?To participate to an existing discussion thread, go to the discussion and scroll down until you find the post you wish to reply to. Click on the "Reply to This" link, and a box will appear where you can type your comments. You can also add photos or links, or even attach files if you wish. When you are done typing your response, click Add Reply to post your comments.
You can also begin a new discussion thread if you don’t see one that addresses the topic already. Select a category where your discussion belongs, and click the "Start a Discussion" link on the right. You’ll be asked to create a title for your discussion and to type an initial discussion post. You can also add tags so people can more easily find your discussion, or upload supplemental files. When you have entered all the appropriate information, click Start Discussion to post.
Groups
What are groups for?
Groups allow members to organize themselves in smaller groups around specialized interests. For instance, a Chicago-based Duchenne parent might create a group for other PPMD Community members in her region. Groups have their own discussion forums, where they can discuss issues of specific interest to them. The Chicago group might, for example, create discussions about which area doctors they prefer, or which local attractions are wheelchair-accessible. Additionally, members of a group can receive messages sent only to members of that group.
How do I join or create a group?To view the list of existing groups, click the Groups tab in the green bar. To find a group, you can search groups by name or sort them by activity, number of members, or how recently they were created. Click on the name of the group you wish to join and on the group’s page click the Join… link on the right next to the green plus.
If you would like to create a new group, go to the main Groups page and click the "Create a Group" link at the top right. You will be asked to name and describe your group, choose a representative image, and select the features and privacy settings for the group. Once you’ve entered all the information, click the Create Group button. You will then be asked to invite members to your newly-created group. Enter email addresses of the individuals you’d like to invite and click Send Invitations, or you may skip this step.
Once you have created a group, you will have the options to edit the group’s settings, manage group members, or delete the group altogether. You can also choose to send a message to all members of the group.
Photos, Videos, and Blogs
How do I add photos to my page?
You can add photos by clicking on the Photos tab that appears in the green bar at the top of every page. Once you’re on this page, click on the Add Photos link on the top right, next to the green plus sign.
In the left pane, find the photos on your computer. To upload them, double click on a photo, or you can drag and drop a photo or a whole folder to the right pane of Photos to Upload. Once you’re ready to upload, click the Next button. On the following screen, you can add titles, tags, and descriptions for your photos and choose the privacy level. To apply the same information to all of the photos in this batch, fill out the top portion under Edit Information for All Photos, then click the button to Apply this info to the photos below.
You can also upload photos from you mobile phone or email account by sending them to your PPMD Community email address, found under My Settings.
How do I add videos to my page?You can add videos by clicking on the Videos tab that appears in the green bar at the top of every page. Once you’re on this page, click on the Add Videos link on the top right, next to the green plus sign.
The first time you use the uploader, you’ll see a pop-up window that says “This applet was signed by Ning Inc. and authenticated by VeriSign Inc. Do you trust this certificate?” Click the Trust button to proceed.
In the left pane, find the videos on your computer. To upload them, double click on a video, or you can drag and drop a video or a whole folder to the right pane of Videos to Upload. Once you’re ready to upload, click the Next button. On the following screen, you can add titles, tags, and descriptions for your videos and choose the privacy level. To apply the same information to all of the videos in this batch, fill out the top portion under Edit Information for All Videos, then click the button to Apply this info to the videos below.
To add videos directly from YouTube or Google instead, scroll down and select this option from the bottom of the Add Videos page. Copy the “embed” code for the video and paste it in the text box provided.
You can also upload videos from you mobile phone or email account by sending them to your PPMD Community email address, found under My Settings.
What are tags and why should I add them?Tags are a great way of labeling photos, videos, blog posts, and discussions by their content. For example, a photo might be tagged “Shawn” “birthday” and “2008”. Tags help to organize content, and make it much simpler to search for and find the exact information you or other PPMD Community members are looking for.
How do I view or manage my photos?You can view your photos by clicking on the Photos tab that appears in the green bar at the top of every page, then clicking the My Photos link that appears just beneath.
From this page, you can search your photos by tags, sort them by recency or popularity, or click on individual photos to edit them. Clicking on any photo will allow you to rate your photo, edit the title, description, and privacy settings, add tags, add the photo to your favorites, send a message to share the photo with others, or delete the photo. You can also see how many times your photo has been viewed, how it has been rated by others, and any comments others have left on your photo.
Additionally, you can organize photos into albums. Click on My Albums at the top of the page, then select the link for Add Albums. You can choose photos to add by tag, or drag and drop them individually into the album collection. Add an album title, description, and representative cover photo, and click Save to create.
How do I view or manage my videos?You can view your videos by clicking on the Videos tab that appears in the green bar at the top of every page, then clicking the My Videos link that appears just beneath.
From this page, you can search your videos by tags, sort them by recency or popularity, or click on individual videos to edit them. Clicking on any video will allow you to rate your video, get the code to embed your video elsewhere, edit the title, description, and privacy settings, add tags, add the video to your favorites, send a message to share the video with others, or delete the video. You can also see how many times your video has been viewed, how it has been rated by others, and any comments others have left on your video.
What are blogs and how do I create one?The blog is your personal journal on the PPMD Community site. You can write about whatever you wish, as often as you wish. As with photos and videos, you can change your privacy options so your blog is visible to anyone on in the PPMD Community, just your friends, or only visible to you.
To get to your blog, click on the My Page tab in the green bar, then click on the My Blog link that appears just underneath. You can add a new blog post by clicking on the Add Blog Post link. Once you write the first entry in your blog, this link will remain on the top right of the page.
How do I view or manage entries in my blog?To get to your blog, click on the My Page tab in the green bar, then click on the My Blog link that appears just underneath. Abbreviated versions of your most recent blog posts will appear in the center of the page, while links to older posts appear along the right side, organized by recency, popularity, and month created.
By clicking on the title of any past entry, you can view the entire post, along with any comments others have made. From here, you can also choose any of the Admin Options on the right, allowing you to edit your post, add tags, or delete the post.
Choosing the Manage Blog link in the Admin Options box on the right will bring you to a summary view of all your past blog posts, allowing you to view and approve or reject comments, edit drafts or published posts, or delete blog posts altogether.
Who else can see and comment on my photos, videos, and blog?You can choose to share photos, videos, and blog content with everyone on the PPMD Community, only your friends, or even just yourself. Choose the My Settings link on the right and click on the Privacy tab. Choose an option for each setting and click Save to update. You can change these default settings at any time.
Additionally, you can set the privacy for specific photos, videos, and blog posts, either at the time you post them, or afterward. To change the privacy of a photo, go to that photo and click the link to Edit Photo. On the right side, you can choose to limit viewing to anyone, Just My Friends, or Just Me. Click Save Changes to save the new privacy setting. The same can be done by clicking on a specific video or a blog post.
Events
What are events for?
The Events section gives members of the PPMD Community a chance to find out about and attend educational, fundraising and advocacy events. You can search for upcoming events and see who is planning to attend, RSVP to events that appeal to you, or organize and promote your own related event. This is a great way for ideas from the online community to take shape and have an impact in real life.
How do I RSVP or create a new event?To view upcoming events, click the Events tab in the green bar. You can find specific events by typing in the search box, or by clicking on event types or on a specific calendar date. Select the event title to view time and location details as well as an organizer and event description. Once you find an event you wish to attend, fill in the appropriate circle and confirm your plans by clicking the Click here to RSVP link. If you wish, you can also click Export to Outlook or iCal to copy the event into your computer’s datebook.
If you would like to organize a new event, go to the main Events page and click the Add an Event link at the top right. You will be asked to enter an event title and image, date and time information, event type and description, and organizer contact information. You can also choose the privacy setting for your event. Once the information is completed, click the Create Event button. You will then be asked to invite members to attend your event. Enter email addresses of the individuals you’d like to invite and click Send Invitations, or you may skip this step.
If you have other questions you’d like us to address here, please send us at note at community@parentprojectmd.org.
Last updated by PPMD Jun 3, 2008.
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