May is Celiac Awareness Month. When I was diagnosed with Celiac in 2006, thankfully, the Internet was there for help and resources. I reached out to the local Denver Celiac support group as a newbie, and barely got any information or response from them. It was frustrating. And I have to say, I still think they could be doing a better job. For example, since May is Celiac Awareness Month, how about having an event to promote this? Perhaps a table at a local Sunflower or Vitamin Cottage, or at one of the Farmer’s Markets? I’ve seen nothing. This is the best time to have some articles and information in the Denver Post, 5280 magazine or even Westword.
When I checked their website out today, there is no mention of May being Celiac Awareness Month. And better yet, while their site states “We are an educational, service and support organization for individuals and their families and friends living with celiac sprue or dermatitis herpetiformis.”, when you go to their newsletter section, it states that section was last updated in November 2008 and has no newsletters from January, March or May 2009. To their credit though, they did launch a much better website then what was there when I first checked them out in April 2006. Yes, I am frustrated with the lack of awareness, education and service they COULD be providing.
How can you be an educational, service and support organization if you don’t provide what is needed? I realize it’s a volunteer run organization and we are all short on time. I sit on a volunteer board and know it’s a lot of personal committment at times. However, I am challenging them to get their site updated, and maintain their updates. It’s important for not only current members (which I admit, I’m not because I’ve not been shown the value of joining their organization) and newly diagnosed seeking information.
So here’s what I am challenging them to fix (at this time):
1) Update their newsletter area to provide all of the newsletters, especially the 2009 issues
2) Fix the neighborhood huddle link as it doesn’t work
3) Update their info packet from January 2008, as I am sure things have changed
4) The membership link takes you to an application form – I think it’s important for folks to know what their membership gets them.
5) Recipe section – coming soon. There are a ton of gf recipes online, from your own members and from previous newsletters. Shouldn’t be hard to update.
If anyone from the local chapter has concerns about this posting, you can email me . But I highly encourage you to help others by making these changes.
GFS
Steve, do you know how many people run the Denver Celiac Support Group? There are many chapters of the CSA, but in my experience support groups have only one or two key people that are trying their best to organize and keep these groups afloat. I was a member of a group in NY for a very long time that was kept going by only two individuals for many years. They did an outstanding job coordinating quarterly meetings and providing a one-page newsletter a few times a year to their members. There was no website for this group simply because the organizers didn’t have enough time to or the skill set to put this together.
Now as an adult, I am the sole organizer of a Celiac Disease group of more than 850 people in metro NYC. Unfortunately, I get little or NO help organizing our events and updating our website. I have a full-time job and write a gluten-free blog on top of organizing this group. I do the best that I can to have at least one event a month, but on a weekly basis I get complaints that this is not enough. In addition to organizing events for our group, I also try to advertise other events in our area and keep our message board lively by posting about products and vendors in our area. I contact the press when we have events and also try to arrange sponsorships with gluten-free vendors. My pleas to my group for volunteer organizers and assistant organizers go unheard. I have had a few people comment they would like to help, but it doesn’t go much past that. In a city as big as New York with a group approaching almost 900 people, I am disappointed by this apathy. There aren’t enough hours in the day/week to do all I would like to do for our Celiac Disease group, yet I am discouraged by the emails I get from disappointed group members or blog posts such as this one.
Are you located in the Denver area or in another area that has a local Celiac support group? Do you volunteer for this group? If not, why not? I think by nature people are followers and not doers, but I feel that if you complain about the lack of activity for a group and then do not volunteer that you shouldn’t point fingers at anyone.
I welcome your rebuttal but also encourage your and your readers to not only participate in their local support groups but to volunteer as well. Try putting yourself in the shoes of your organizer for a day and understand the heart and soul that goes into your group.
Thank you.
I’m not sure how many people are actively involved, but on their website they have 11 key contacts, which I think is alot. I don’t volunteer for this group, no. And it’s partly due to the negative experience I had when I first was diagnosed, as well as I am on other non-profit boards where I volunteer my time. Like you, I have a full-time job, and have this blog for support for others. I did reach out to them a while back when they were looking for a newsletter editor and submitted an idea of what we could do with the newsletter and never heard back. Not a good experience overall. I’m not judging them, just offering them a challenge.
Steve, when I was diagnosed last year it was in Colorado Springs, and I know you’re in Denver, but I found that the group in CS was well worth driving up to. My sister lives in Denver and while visiting with her, I have found nothing there to help me; but CS was a wealth of information.
As a full time RVer, we are running across a lot of places that have “Support Groups”, but really aren’t supportive at all.
Good luck in getting Denver on track.
Hey Steve! Long-time-no-”see”
First, you won’t find anything about May being celiac awareness month on the Denver Metro website because they are a CSA chapter, and CSA recognizes October as celiac awareness month (and have for 20-something years, before it was Breast Cancer Awareness month).
Second, I ditto your post. That is why I am involved with the Boulder County Celiacs. Now, don’t get me wrong, this group is also slow moving and offers little to those who need help (and I say that with the utmost honesty and emberassment, because I am the Group Chair….). We have 2 or 3 people doing something at any given time, and there just isn’t enough time in the day/week/month to do *enough* for the celiac community. But I/we are trying.
Anyway, hope you are well!
Tiffany
News Release
Julie McGinnis/The Gluten Free Bistro
FOR IMMEDIATE RELEASE 720.329.3254
The Gluten Free Bistro’s Pizza Crust is Available in Radda Trattoria!
Boulder, CO (July 6, 2009) — Did you think the day would never come that you could enjoy a gluten-free, thin, rustic-style crust in a hip and cool restaurant? Well, those days are over, because Radda Trattoria of Boulder, CO has added to their Tuscan inspired menu a gluten-free crust made by The Gluten Free Bistro (www.TheGlutenFreeBistro.com).
The Gluten Free Bistro is a local company that offers gluten-free products to restaurants, schools and hospitals. Their products are created by a registered dietitian with a master’s degree in nutrition who is also gluten intolerant. The Gluten Free Bistro offers two styles of crust; the original-style or thicker crust and their Neapolitan-style or thinner crust. Both are gluten-free and free of other major allergens, however, the original-style crust does contain egg whites. Radda Trattoria will be offering the thin style crust.
Barb Verson, COO of the The Gluten Free Bistro states, “We have been formulating these crusts for seven years and feel that the ingredients are both delicious and nutritious. Our ingredients provide the gluten-free consumer with B vitamins, iron, protein and fiber, which is not something other gluten-free products can claim.” Kelly McCallister, CFO, comments that, “The crusts are delicious and even non-gluten free consumers are telling us they taste as good as the real thing.”
So, are you ready for a delicious pizza, topped with authentic Tuscan ingredients in a fantastic settting? Go to Radda Trattoria (www.RaddaTrattoria.com) located at 1265 Alpine Ave. in Boulder on Wednesday, July 8th and be the first to enjoy!
The Gluten Free Bistro was founded by three gluten-intolerant locals that were dissatisfied with the gluten free pizza crusts available. After, formulating a delicious and nutritious gluten-free crust they started approaching restaurants with idea of offering it to their diners. Now, those with gluten intolerance and celiac disease can order a pizza in a trendy restaurant and have the same dining experience as everyone else. Coming soon are more of The Gluten Free Bistro’s products in the Boulder and Denver areas. Call 720.329.3254 or visit http://www.The GlutenFreeBistro.com.