Welcome to Hope Community, a private message board where parents and caregivers of children with CDG-PMM2 can ask questions, share what’s working, and support each other. Here’s how to get started.
1. Join the community
- Go to hopemessageboard.org and click Create a free account.
- Choose a username and enter your email and a password. Tip: use a first name or nickname, not your full name.
- Check your email for a message asking you to activate your account, and click the link. (Check your spam folder if you don’t see it.)
- A volunteer from the Hope Foundation will approve your account, usually within a day. You’ll get an email when you can start posting.
Hope Community is for adults 18 and older.
2. Sign in
- Click Sign in and enter your username or email and password.
- Forgot your password? Click Lost your password? and follow the email.
3. Set up your profile
- When you’re signed in, click your name or picture at the top of the page.
- Choose Profile, then Edit.
- Add a display name like “Maria (Leo’s mom)” and, if you’d like, a little about your family.
- You can add a profile photo if you want to. It’s optional.
4. Find your way around
- Newly Diagnosed: new to CDG-PMM2? Start here and ask anything.
- CDG-PMM2 Experiences: milestones, hard days, and everyday life.
- Medical Information: specialists, therapies, feeding, seizures, research news.
- Family Support & Resources: insurance, school, equipment, siblings, self-care.
- Events & Announcements: foundation news, conferences, fundraisers, meetups.
Use the search box to look for a word, like “feeding tube” or “IEP.”
5. Read posts in your language
Look for the language menu in the bottom-right corner of the page. Choose your language and the whole page, including other families’ posts, is translated automatically. You can write in whatever language you’re most comfortable with. Automatic translation isn’t perfect, so if something sounds odd, ask.
6. Reply to a conversation
- Open a conversation by clicking its title.
- Scroll to the reply box at the bottom.
- Write your reply and click Submit.
7. Start a new conversation
- Click the topic area that fits best.
- Scroll to Create New Topic at the bottom.
- Give it a short, clear title, like “Feeding tube tips for a 2-year-old?”
- Write your message and click Submit.
8. Get notified about replies
- Check Notify me of follow-up replies via email when you post, or click Subscribe on any conversation.
- Click Favorite to save a conversation so you can find it later from your profile.
9. Edit your post
You can edit your own post for a short time after you publish it. Click Edit on your post. If you need something changed or removed later, contact a moderator.
10. Staying safe and kind
- Protect your family’s privacy. Don’t post full names, addresses, phone numbers, medical record numbers or photos of medical documents.
- Share experience, not medical advice. Always check with your child’s care team.
- Be kind. Everyone here is on a hard road.
- See something that worries you? Email a moderator at jay@revfitllc.com.
- In an emergency, call your local emergency number. This board isn’t monitored around the clock.
Please read the Community Guidelines and Privacy Policy.
11. Leaving the community
To close your account, go to your profile, choose Settings, then Delete Account, or email us and we’ll help.
We’re so glad you’re here. You don’t have to figure this out alone.