Network helps kids, families ‘seize diabetes’

It may look smooth from the outside, but there’s nothing simple about managing diabetes, with the round-the-clock need to regulate ups and downs in blood sugar — especially for a kid.

When her daughter Tia was diagnosed with Type 1 diabetes three and a half years ago at the age of 8, Tamar Sofer-Geri was taken by surprise.

“This came totally out of the blue for us, as it does for many families,” the Los Altos resident said. “We have no family history of Type 1 diabetes.”

Hungry for information about a diagnosis that could change meals and other aspects of daily life for the whole family, Sofer-Geri joined a Yahoo group for parents of kids with Type 1 diabetes and began networking.

“With diabetes, if you’re two weeks ahead of someone in the journey you can already help them out,” she said.

“Very quickly we were mentoring newly diagnosed families, just as people had helped us out.”

The new situation brought out the organizing instincts in Sofer-Geri, who worked at Stanford’s Graduate School of Business and was born in the United States but raised and educated in Israel.

She emailed the parents group for a “carbs and coffee” gathering at Esther’s German Bakery and turnout was strong.

That group of parents and caregivers now meets twice monthly — once in the morning and once in the evening.

At Tia’s request, Sofer-Geri launched “carbs in the park,” a monthly gathering for families in public parks and other recreation venues, including Winter Lodge and bowling alleys.

Last year Sofer-Geri launched a full-blown nonprofit organization, naming it Carb DM — a play on the Latin phrase “carpe diem.” The “DM” in the title is for “diabetes mellitus” or “diabetes management” — people can choose, she said.

With a mailing list of more than 400 families, adults and health care providers, the group runs about seven programs a month for toddlers, kids and adults. Some events occur in the East Bay, and Sofer-Geri also is working on offerings in Spanish.

“We’re always learning — every time I go to something I learn,” she said.

“The adults who have been living with diabetes for 40 years can actually learn from the newbies because they have new information that older folks may not be keeping up to date on.

“I don’t know anyone who considers themselves an expert, even the doctors,” she said, describing the disease as “non-linear, not logical and an art more than a science.”

This past week, Carb DM sponsored an evening about living with diabetes as a college student, featuring a panel of students, recent college graduates and parents, who shared their experiences.

On Aug. 14, the group will sponsor a talk about living with diabetes in schools, with information about the right to accommodations of rules surrounding eating, bathroom breaks and test-taking.

Palo Alto’s Parents Place, a program of Jewish Family and Children’s Services, has provided a venue for many of the events and has been “very supportive,” Sofer-Geri said.

But she yearns for a space the group can call its own — with a lending library, a lounge and product samples — along the lines of Palo Alto’s Blossom Birth or Breast Cancer Connections.

“What we really need is a resource center, a physical space where there’s always someone to talk to,” she said.

As for Tia, she’s 12 now, about to enter seventh grade at Blach School in Los Altos and managing her diabetes with an insulin pump, which she wears everywhere. She spent part of her summer attending two different camps for children with diabetes.

“To me, diabetes is like brushing your teeth,” she said.

“At the beginning it is something new and different, but after you have been doing it for some time you get used to it. It becomes part of your life.”