I also contacted the Celiac Disease Foundation so the group could become connected with them. I felt it was important to be connected to a national organization.
Sloane: How did you get space?
Linda: We started at a big reserved table at Soul Dog, which fit 10-12 people. Eventually we moved to Vassar Brothers Hospital because a member had a contact there. This gave us a real conference room, which we've already outgrown. We moved into a larger conference room last month. We now have guest speakers -- like you -- and product samples and much more to offer our members.
Sloane: How did you grow?
Linda: Members are advocates and they post flyers in doctor's offices and health food stores, they also do public outreach and events. I've also done interviews like this one and in our local press. I did a TV interview last year and we're being featured in the Celiac Disease Foundation newsletter spring issue.
Sloane: What would you say to anyone newly diagnosed?
Linda: Join a support group. You can sample products and learn from other member's trials and experiences. A group will clarify any confusion and make you feel like you are not alone and you'll enhance your social network of celiacs.
Sloane: How can someone start their own group?
Linda: First see if there already is one, you don't have to reinvent the wheel. If there is no celiac support group in your area, contact the Celiac Disease Foundation for guidance on how to start one.
