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More than two years ago, after Davida Luehrs co-founded the Foundation’s Northern Virginia chapter, she asked FFB staff if it would be OK to host a “coffee social,” an informal get-together at a local coffee shop, as a way to bring in new volunteers while allowing retinal-disease sufferers to share their stories.
“We said, ‘Sure, why not?’” Judy Price, Regional Director of Development, East, recalls. “So she hosted the very first social, and a dozen people showed up. Then she kept going.” As NoVA’s membership grew, Judy encouraged other chapters to arrange socials, each one tailored to its community and facilitated by a volunteer.
“These are not like the chapters themselves, run by Foundation staff,” says Maria Costa, Director of Development, Greater New York Region, where 10 “networking groups,” as she likes to call them, gather for informal meetings. “All the facilitators are affected by disease themselves. People going to these meetings look at them and say, ‘You know what we’re going through.’”
This novel means of welcoming new members into the Foundation seems to be working. Collectively, the chapters have hosted roughly 100 socials to date, and, on average, “two to three new active members walk away from the meetings,” Judy says.
But they’re more than just recruitment venues. As they continue to pop up across the country, Judy is finding that, no matter what the format—coffee or pizza socials or networking groups—“they’ve become important social outlets, a way for attendees to bond, meet others and share stories.” In fact, she adds, after a facilitator has handed out a local low-vision resources pamphlet, “at least one person says they’ve never seen something like this, even those afflicted for 10 years. It’s amazing.”
“We have met many new constituents through these groups,” says Maria.
So it only makes sense that Foundation chapters now offer a Networking Group Information Kit, one that piggybacks on what Maria’s office created for its region, where the groups continue to come up with creative ways to draw attendees. Each kit defines what a networking group is, suggests meeting locations (including schools and libraries), then walks facilitators through the process. The two-hour meeting’s centerpiece is the group discussion, which the facilitator kicks off by sharing her story about living with a retinal disease. She then goes around the room, asking participants to share theirs. With 30 minutes to go, she makes plans, with the attendees’ input, for the next meeting.
At best, Maria says, a facilitator establishes a core group of members who stay in touch, donate and/or volunteer, returning to meetings whenever they feel the need. Of the New York region’s 10 groups, one is run by facilitator Frann Glick, an RP sufferer who has a core group of 60, Maria reports. And, aside from monthly meetings, she hosts an annual gathering that offers something of a twist.
Labeled “Double Vision,” it splits participants into two groups, those afflicted with retinal diseases and their sighted supporters, and conducts their group discussions in separate library meeting rooms. “You might have a mother with RP in one room, talking about her challenges,” Maria explains, “and then the daughter of that mother in another room, sharing her concerns.” In other words, it enables each group to gain unique advice and support.
Other New York groups are being just as creative. In Manhattan, there’s one geared specifically toward young professionals. And another, meeting for the first time June 18, will be the first disease-specific group, for families affected by Stargardt disease, the juvenile form of macular degeneration. The meeting, Maria says, will be facilitated by a psychiatrist who suffers from Stargardt and attended by a genetic counselor and a physician, who will share their expertise.
“There’s no end to how specific these can be,” says Judy. “And once the word is out that you can facilitate or attend one catering to your specific needs, we’re hoping, nationwide, to have at least one happening somewhere every week.”
And while the socials or group meetings are usually tethered to Foundation chapters, they’ve also been taking place in regions that have yet to establish chapters.
“In Portland, Maine, where we don’t yet have a chapter,” Judy says, “we have one volunteer who really wanted to get something going. So she started up a coffee social. Now there’s going to be a VisionWalk up there, and for one of the meetings, we were able to bring in a doctor from Boston to talk about retinal diseases. Fifty-five people showed up! So, yes, these groups are working—in all kinds of ways.”
Volunteers interested in forming a social or networking group should contact the Foundation’s national office at
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
or (800) 683-5555.
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