A Foundation Building Strength (AFBS) is excited to support smaller, regional gatherings for NM families to stay connected around the world. 

In 2023, there are currently gatherings being planned in the following locations:

  • Palo Alto, California
  • São Paulo, Brazil (virtual, in Portugese)
  • Kungsbacka, Sweden (in Swedish)
  • Charlotte, North Carolina
  • New York City, New York

Are you interested in learning more about planning a local gathering near you? This event is a simple way to connect with families, learn about current care and research, and stay active in the NM community.

Basic steps to planning a local gathering: 

  • Decide on the type of event. Is it large or small? Social, educational, or both? Can you attach a theme, or “hot topic?” Choosing the type of event will both help you figure out what kind of planning and how much lead time it requires, and will spark attendee interest. 
  • Choose a date. Planning 3-4 months in advance will provide the most flexibility for venues, vendors, and attendees, resulting in the highest engagement and attendance — which will lead to a great event.
  • Secure a venue. Many popular venues fill up several months in advance, so again, at least three months’ lead time will ensure the highest venue availability and possible cost savings. 

For smaller events, check out your local library, which might have free-to-use conference rooms perfect for seminars, panels, and talkbacks. Churches may have community rooms, too, that are accessible and free to use. 

For a purely social event, restaurants are a great place for families to meet. If it will be a small group, you could consider having it at your home (as long as it would be accessible for all). 

  • Budget: Some limited funding is available to support these events from AFBS.
  • Send a save-the-date. A head’s up to the community via email and social media will allow families to plan around the event. With more advance notice, attendees will benefit from lower-cost travel and flexible schedules, especially if the venue is more than an hour or two away. 
  • Invite a speaker. Researchers and clinicians may not always be available, but if your invitation is shared with clear expectations, you may have a better chance of recruiting a researcher to attend. 
    • Your email could read something like: “Dear Dr. Smith, I am holding a regional event, sponsored by A Foundation Building Strength, on (date, time) at (location). Would you be willing to do a 15 minutes presentation on (topic), followed by 15 minutes of Q&A?”  
  • Make an effort to reach out to possible attendees. Who in your community would be interested in attending? AFBS’s Facebook page is a great way to connect with other affected individuals and families. Your neurologist could also pass on meeting information to other NM families in the area, and NM would be happy to help with outreach to affected families in your area. 

Questions? Comments?

Contact Lyn Baier, AFBS Board Member and NM MomLyn@buildingstrength.org

Feel free to reach out to us with questions, comments or if you are interested in hosting a family gathering near you.

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