Having SMA comes with numerous challenges, but one of the best ways to make things more manageable is to engage with the SMA community. While things like the annual Cure SMA conference are great, it’s important to stay active in the community year-round. To help guide you, here are three tips for building an SMA community in your area.
The first step is to connect with SMA communities online. Join SMA Facebook groups. Look to see if there’s an established Cure SMA chapter in your area. If there isn’t one, find other SMA individuals and families near you and consider starting one. Especially for people who find it hard to travel, connecting with SMA folks online is a great starting point.
Talk Regularly With Other SMA Individuals and Families
Whether it’s people in your area or someone you met at a conference, it’s important for SMA individuals and parents to talk with one another regularly. Developing close relationships can help foster support as you share experiences, as well as tips for managing daily life with SMA. Especially as you look for guidance about things like going to school and entering the workforce, talking with other SMA individuals who have experience in these areas will benefit you greatly. Make time to talk with these people regularly over the phone or in-person.
Plan Meetings and Fundraising Events
Once you’ve established an SMA community in your area, make an effort to schedule regular times to meet. Get dinners together. Go bowling or to a park. See a movie together. Online forums and talking via Skype or over the phone are great ways to communicate, but the best communities stem from in-person interaction. Even meeting once a month can help foster deeper relationships.
Meeting regularly with others in the SMA community also opens doors for fundraisers. After you’ve established a solid community in your area, consider working with each other to raise money for organizations like Cure SMA and the MDA. Get creative with the types of fundraising events you coordinate, and use them as a way to educate others in your area about SMA.
These are just a few tips for how to engage with the SMA community. Be sure to share tips of your own or other resources in the comments section.
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.
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