By Sylvie Zebroff, CLBC Family Partnership Advisor
Families-in-Touch founder Donna Long takes a sip of her coffee and smiles. “I didn’t have a clue what developmental disability was, until I had Lucy. As soon as she was born the doctor just said ‘she has Down Syndrome’. It all started from there.”
Her daughter Lucy Long was born November 17, 1997, and since that time Donna has learned a great deal about disability, advocacy and the very real need for families living with disability to make connections. Donna and her husband Phil Long have been raising Lucy and her two older brothers, James and David, and have been foster parents to many others. Despite her busy family life, Donna also took the unique step of developing “Families-in-Touch” or FIT, a family e-mail network connecting families and individuals across the BC Interior.
FIT began over 10 years ago, with a cluster of Kelowna parents of children with disabilities sharing activity information via email. “We’d plan group trips to Old MacDonald’s Farm, things like that”, says Donna.
The small circle of friends sending the occasional e-mail has now grown to an email exchange and information sharing group with between 150 to 200 subscribers. Concentrated in the Central Interior, but with readers as far-flung as Toronto, Donna emphasizes that FIT has little editorial comment. It is, she says, more of an email information hub about disability in the widest sense, but with a regional Okanagan flavour.
It is also a labour of love; Donna oversees and maintains this e-mail network with no external funding. The circulation of e-mail information is done on an unscheduled but regular rotation.
“Usually, as the information comes in, it soon goes out again,” Donna laughs. The FIT e-mail list has grown over time, and almost entirely through word-of-mouth and members forwarding e-mail referrals to others.
“Families pass it on to other families; we’ve even got some disability professionals on the FIT list that want to stay in the local loop.” Donna points out that the mailing list of subscribers is never shared. Families and individuals can, of course, forward any information they would like circulated, but Donna discourages commercial promotions or information related to retail or sales events. She welcomes workshop information or disability-related and not-for-profit fundraising or person-centered events and activities.
The connections don’t stop there. Now in its 10th year, FIT also sponsors a regular in-person event, the Families In Touch Breakfast is for those families who have a family member with a disability. Taking place the second Friday of every month at a local restaurant, Donna regularly sends out e-reminders to FIT subscribers and hosts the casual breakfast and coffee drop-in for families looking to make further personal connections.
The atmosphere of these breakfasts is easy and open, “We all get that families face all kinds of challenges to get out on a regular basis”, Donna observes, “Really, it’s come as you are, when you can. One of the nice things is that everyone who comes here gets that.”
After so many years, how does Donna keep going? “I do get tired,” she says. “I tried to take a year off, but the whole thing is addictive. Things keep changing. People keep wanting to connect.” She won’t speculate on the future of FIT, except to say, “It’s become its own entity. Years ago it was just a baby of an idea, now it’s moving into adolescence. I do think younger parents need to start getting involved more, to keep the momentum going. At some point it will be time to pass on the torch.” She smiles, “See you next month for breakfast.”