There are so many extraordinary grassroots advocates making a difference in their local communities that we're honored to highlight their tireless work with an ongoing series, fittingly titled "Amazing Diabetes Advocates"!
This month we're bringing you Tamar Sofer-Geri, mom to 12-year-old Tia, who was diagnosed with type 1 three years ago. Tamar is founder and Executive Director of Carb DM (get the reference?!), a support group for families dealing with diabetes in the San Francisco Bay Area. When Tamar launched the organization two years ago, it started with one program, Coffee and Carbs. Since then, it's expanded to include teens, with A1 Teen, young adults, with Beer and Basals, and toddler and preschool kids, with Little Carbs.
Having left the working world to stay home with Tia and her son, Negev, age 7, Tamar now works full-time managing the Carb DM group, which keeps growing and growing. Tamar was kind enough to chat with us while on vacation in Israel (!) about how she manages it all and share her advice on how to start your own group for those with such ambitions.
DM) There are lots of support groups at clinics in the San Francisco area. What's your goal specifically with Carb DM?
TS-G) Carb DM's mission is to provide PWDs opportunities to get together face-to-face for the purpose of gaining information, education, and support from one another as well as from experts in the field. Our entire focus is on providing psycho-social support that is so often neglected in the clinic setting and people are realizing more and more how critical it is to the medical outcomes of PWDs. Our goal is to have a room of our own—it will be the place people turn to and return to throughout their lives. Just as people go to the pharmacy to pick up insulin, strips and syringes, they will come to Carb DM for the information, education, and support that they need.
How did Carb DM get started?
Like all things in California, it happened "organically." My daughter was diagnosed and I realized quickly that being around parents of children with type 1 was the best thing for me and a really good thing for my daughter. We went to a lot of JDRF events and got to know people. In June 2009, a child from a family my husband knew from work was diagnosed. We got to know each other's families. They are also Israeli.
Somehow I had the name Coffee and Carbs stuck in my head, but I didn't really know how to start a group. I thought, "Who am I to start the Coffee and Carbs group?" But this mom said, "I need support" so I said, "OK, let's do it."
How do you keep this thing running? Do you have a staff?
I don't have a staff. I have a board. The first volunteer / board member was another mom who was a non-practicing lawyer. I basically bought a guide to starting a non-profit in California, and I asked her to register us as a non-profit. That wasn't her field but she was able to figure it out and find an accountant. So she was my first volunteer.
Now I have four board members. Three of my board members are fellow moms, and one is an NP, CDE at Stanford. I also have few other volunteers for fundraising. There's a mom who hosts events in the East Bay and two volunteers for another group, Beer and Basals, which is the young adult gatherings. Most of the work is what I'm doing. I go to almost all the events, and I do all the day to day operations.
Yes. I used to work at Stanford, but I quit before my daughter was diagnosed and worked in their Office of Development part-time, and then worked for the Business School for alumni. I quit that in 2008 and she was diagnosed in 2009.
What are some exciting upcoming events or new programs you're working on?
We are growing all the time. For example, teens really need to meet other teens so we've started A1 Teen, for ages 13 to 15 and another starting soon for ages 16 to 18.
We're really focusing on low-income and non-English speaking community and letting them know about our programs. We want to get that going more and offer them more services. We're expanding to the East Bay and we have monthly speakers there, as well as the young adult group, Beer and Basals.
We'll be continuing everything and growing everything. Everything is free, basically (since we exist on donations), and it's extremely valuable to parents, their kids, families. Dare I say it's life-changing to many people who experience it?
I think she's proud of it. She's the reason why I'm doing this and what started it all. She's very supportive and she does give me ideas and make demands. She has very strong opinions about what she likes. She's never one to complain about (diabetes), but it's turned it all into a very positive experience for her.
We meet a lot of newly diagnosed families, and she's become a mentor to a lot of kids. It's been a very powerful experience for her to become friends with them and show them the ropes. She's become the poster child for diabetes in the group. I'm hoping this involvement that is a major part of our lives will help us through the teen years. I'm hoping she will not neglect her diabetes when we're so heavily invested in this.
What advice do you have for others who might want to start their own group?
It really just takes doing it. All I did to start it was to send out an email. It's a lot more work now, but the first thing I did was send out an email saying, 'I'm going to be at this place at this time.' I chose a cafe I liked, so I figured if no one comes, the worst thing that can happen is I get an hour to myself. That's really a small commitment. People will come or not come, but mostly they come. And everyone is so much better afterwards. For Carbs in the Park, we just cut up some watermelon and go to the park. It's really not that complicated. Now it's more complicated of course, because there are so many programs. But really the start just takes sending out an email and saying, 'I'll be there.'
You do have to make the commitment to keep it going. The dates are definitely random to suit my schedule, but do whatever works. Do it and be there, and people will come!
That's excellent advice, Tamar! Thanks for all your hard work helping families!