SMA News Today is proud to present our new forums page. This page is designed to help readers better connect with each other, ask questions and engage with others in the SMA community. We’ve broken up the forums and groups based on specific topics, connections to the SMA community and age groups.
The following is a guide for using the public forums section. Part two will focus on joining private and public groups.
The first step is to create a profile. Simply go to the forums page and register with your name, age and whether you’re an SMA patient or caregiver. There is also an option to write a short 300-word bio about yourself.
From there you’ll find the main forums page. These are the public forums, so all posts will be visible to anyone who visits this page. All of the discussions are moderated by Community Editor Kevin Schaefer and any inappropriate comments will be deleted.
The forum titles and descriptions are as follows. Simply join the discussions which are most relevant to you.
Forum Titles and Descriptions
- Diagnosis Information and General Questions: This forum is designed for newly diagnosed patients and parents/caregivers who are looking for information about where to start in their SMA journey. Here is where people can ask basic questions about SMA and help each other through the initial diagnosis stage.
- A Forum for SMA Parents and Caregivers: This forum will be strictly a place for SMA parents and caregivers to talk with each other, share tips, ask each other questions, etc. This is also a place for veteran parents to help out the younger ones with newly diagnosed kids.
- Teens With SMA: This is designed for teenagers with any form of SMA to connect, ask each other questions and share experiences. Especially for those thinking about college and entering the workforce, this is a great platform to discuss ways to be more independent.
- Adults With SMA: This forum is for any SMA individual who is 18 or older. Here is where people can find information about anything from entering the workforce to living independently.
- Going To College When You Have SMA: Whether people commute from home or go to a university states away from where their parents live, this will be a place for SMA college students to share tips and ask each other questions. This is also a resource for SMA individuals who are thinking about college to ask questions.
- SMA and Dating/Relationships: This will be a forum for SMA individuals to discuss dating, relationships and marriage. Whether you’re married, dating or have never been in a romantic relationship, this is a place to talk about this subject with other SMA individuals.
- Spinraza: This is a place for anyone to ask questions about Spinraza and share experiences related to the drug. Whether you’ve been receiving it, are currently seeking out the treatment or just want to learn more about it, this forum is designed to provide you with the most accurate information about the first FDA-approved treatment for spinal muscular atrophy. This is also a great place for medical professionals to join the discussion.
Once you’ve found the forum or forums which you’d like to participate in, you’re welcome to create discussion topics or reply to other users’ posts. You can use text, add videos, images, links, podcasts and other media. Just make sure that the content you post coincides with the subject of the forum.
A private messaging feature has also been installed so that members can contact each other directly. If there’s something you wish to discuss which is more personal, the messaging feature gives you the privacy you need. Simply go to the profile page of the person you’d like to reach out to and click the “private message” tab to start a conversation. You will receive notifications if and when they reply.
Stay tuned for part two of this series, which will show you how to join both private and public groups.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.