Support Group Corner

Support Groups come in many different forms. Some are large, some small, some meet monthly, some meet only a few times per year, some meet in person, some are on-line only. There are no rules. We would like to introduce you to a group that has found an innovative way to make it work for them.

The Pacific Northwest NTM Support Group, started by Marge Gustafson eight years ago, is very diverse. They have 35 members from nine states and Canada. As you can imagine, running such a large, spread out group can be a challenge but they found a way to make it work.

Because of the distance they are mainly an online group, but they try to meet for a face to face in Portland, OR twice a year. Last year, they held their first face-to-face meeting in Seattle as well.

Recently Marge thought maybe it was time to step down as leader, so a decision was made to share responsibilities by restructuring the group with roles divided into four categories.

New Member Contact – Answers questions, tells about the group, provides encouragement and remains a contact person.

Meeting Coordinator – Schedules meetings/forums in various formats – conference calls, online or in person. Encourages more members to take the lead and plan one meeting or forum that interests them.

Librarian/Secretary – Keeps track of topics of interest; catalogs minutes from meetings. Organizes and updates member profiles. Maintains filing system. Highlights emails and stories of note.

Outreach and Research – Encourages members to help educate local medical providers. Shares updates on research and activities in the greater NTM community.

The important thing is their communication is fluid and ongoing. Anyone in the group can send out a message anytime, asking questions or sharing information. “Information and humor bubbling up is what keeps us alive,” says Cynthia Flora, who has agreed to take the reins for the upcoming year. “What makes us strong is we function as a group.”

Support is important. So reach out, stay in touch and connect. Please share your stories and let us about your group or support network. If you are interested in starting a group in your area, email

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