Raising Our Celiac Kids -rock Support Group

[stolly]

My husband and I are really interested in starting a ROCK support group in our area (DD3 has celiac). Everything was so overwhelming when she was first diagnosed, but things are much easier now, and we'd like to help other families while getting the chance to meet people too. I emailed Danna Korn and she sent me the info needed to start a group. I was just wondering from the experts here on this board...do you have a ROCK group in your area? Do you enjoy it? Do you just have parties/potlucks? Do you ever have guest speakers like Danna suggests? Any other events? How often do you meet? In addition to the potlucks/parties, I'd love to come up with lists of tips/suggestions for the participating families...good places to shop, etc. I'm also nervous about how to find/recruit people to join. Just looking for some firsthand experiences before signing the dotted line and starting the group. Thanks!!

ps- I hope it's ok to post in this kids section, I thought I might here from more parents here rather than the support group section.

[missy'smom]

I wish we had a ROCK group in our area so my kiddo could get together with other gluten-free kids. We have a great active support group and occasionally a kid or two will come with parent but not consistantly. We have a focus for each month-we meet once a month-or a speaker but it's a little boring for kids to sit through 2 hr. meeting at night. Speakers are nutritionists, local or regional GI docs. Jan. is back to basics, Dec. is holiday party, one of the summer months is family picnic/BBQ potluck with a local restaurant supplying gluten-free fried chicken. I think it would be fun to bake/make treats with the kids esp. holidays-V-Day Halloween etc.

[CeliacMom2008]

We started a ROCK group last summer for all the same reasons you're considering it. We're still a ROCK group of just one family! But my son so wants to meet other Celiac kids, so I'd say go for it!

What we've done (and that obviously hasn't worked so great...yet!) is create a website, announce it here, announce it in our adult support group's newsletter, and made fliers that we gave to our Ped GI's office.

Good luck!

[flagbabyds]

when i was diagnosed in 1992 there was NOTHING. around second grade there was an adult celiac group that started at stanford. i started attending, but really was the only person under 30 (not to mention i hadn't even gotten into double digits yet...) and i felt a little awkward, cause it was just weird. In 4th grade they put on the first celiac conference for the bay area.

i was greeted by one other girl who's parents had draggede her to the conference too. My mom and her parents decieded that a ROCK group would be a good place to start.

Soon we had about 10 members in it, and it grew by a lot in the following years.

We would meet About oncea month, different places. A lot of people decided to host the meetings at their houses, or during spring and summer we would go to parks to play and eat food.

Every family had to bring at least one dish to contribute to the potluck, and all the ingredents had to be listed (due to kids with other allegies...)

Also recipes were included so we could make the dishes that we liked when we got home. The group grew pretty fast, my mom started a Yahoo group for the group, so we could send out messages about meetings and anything celiac related...

It worked out really well, I outgrew the group and started my own spinoff organization (teens against gluten (TAG)) with Danna Korn and it's working pretty well, it's organized the same as ROCK, just geared towards celiac teens instead of parents.

ROCK groups are great, i would say start posting about your group on all celiac related message boards, and get the news out in any newsletter that wil let you put a blurb about your group in it.

good luck and if you need any advice my e-mail is mstone@ups.edu

[BarbPA]

I'm very impressed that you want to start a ROCKs group - we first learned about celiac disease last winter and our nine year-old daughter was diagnosed in April '08. Last I checked, the nearest ROCKs chapter for us is in Malvern, PA. (We live in Glenside.) They host pot-lucks, a cup-cake decorating party (sponsored by Pamela's I think), a cookie exchange in December. I've been a bit overwhelmed with the huge learning curve and haven't attended any gatherings, but they sound great. My daugher is interested in meeting other kids with celiac disease, so I think it's time to focus on that. Good luck!

[stolly]

Hi BarbPA,

We're in Lansdale, so we are starting a Bucks/Montgomery chapter. My daughter is 3.5, but the group will cater to kids of all ages. We recently attended the CHOP Celiac Education Day and met some other families (with kids of all ages) interested in joining. I'll keep you posted...it will probably be late spring, early summer before we organize our first event.

Holly