Posts filed under ‘Nancy’
Last month several members of the National Foundation for Celiac Awareness (NFCA) team participated in the 15th International Celiac Disease Symposium (ICDS), the most comprehensive celiac disease meeting in the world. Held September 22-25, 2013, in Chicago, ICDS was a whirlwind conference with a chance to meet with NFCA’s distinguished Scientific/Medical Advisory Council and catch up with fellow colleagues from all walks of the celiac disease field. We also enjoyed the opportunity to meet new people and, finally, put faces to names of individuals we regularly work with remotely.
In her October 2013 newsletter note, NFCA President Alice Bast shared some highlights from NFCA’s experience at ICDS 2013. But this was just a sneak peek! Some of our NFCA staff have compiled an informal list of discussion topics and statistics that resonated the most. To give you an idea of individual interests, we’ve categorized the meeting highlights by staff member.
Head to NFCA’s Research News Feed on CeliacCentral.org to get all the highlights!
It’s summertime and lots of women are thinking about how we look and, after that, how we feel. On Saturday, June 8th, Philadelphia magazine hosted their annual Be Well Philly Boot Camp at the well-equipped Recreation Center on the campus of Drexel University. The goal was to motivate, educate, and empower women to get healthy and fit.
And, did they ever!
The 500 gals attending this amazing event checked out all manner of health and fitness items. Penn and Drexel medical teams were there with health tips and on-site screening. There were cooking demos hourly and delicious food sampling, plus group fitness classes — Zumba, yoga, and spinning. If learning how to climb a rock wall is on your bucket list, this was the place to be. Some attendees even grabbed a massage!
And, there was a chance to talk to the experts. All during the day, there were panel discussions on a wide variety of subjects from advice about the right running shoes to how to have more energy. Representing NFCA, I joined a panel called “Gluten Free Guide”. Our moderator, Cass Bailey from Slice Communications, has celiac disease and has embraced the gluten-free diet. Joining me on the panel were Michael Savett, publisher of the Gluten Free Philly blog, and Jennifer Fugo of the Gluten Free School.
It was fascinating! The audience had great questions and was eager to learn the “ins and outs” of the gluten-free diet. Plus, there was real interest in what celiac disease and other gluten-related disorders are all about. We talked about the difference between celiac disease and non-celiac gluten sensitivity (NCGS), along with getting tested and what to look for in restaurants as you begin the gluten-free journey. Getting family members tested was an important point for a number of audience members having relatives with celiac disease.
The big question was… “Is it a diet fad, a real medical issue or just a good thing to practice?” This panel did a great job of making sure everyone left with an understanding that there is such a thing as a medically necessary gluten-free diet. For real!
The overall point of the story is that there is no time like right now to start paying more attention to your health. No kidding, it actually does boil down to exercise and diet — perhaps a gluten-free diet!
Spring is has sprung and that means baseball is here! All of us at the National Foundation for Celiac Awareness (NFCA) have started following our favorite teams and are ready for a great season of America’s favorite pastime. And, we are preparing for our annual night out at the ballpark.
This year, Celiac Awareness Night with the Philadelphia Phillies is on Friday, August 16that Citizens Bank Park as the Phillies host the Los Angeles Dodgers. This will be NFCA’s 6th Celiac Awareness Night and we are looking forward to a great night of great baseball.
This year, we are excited to have a special free raffle to offer visitors to our information table near Section 210. Thanks to the Phillies and Aramark, the basket will include Phillies memorabilia, two tickets to a 2013 regular season game in section 116, a preferred parking pass and a complementary food coupon valued at $30. Better yet, there will be an expanded menu at the gluten-free concession stand that is set up for NFCA’s night out.
Last Friday, I went to the Phillies Home Opener. I either am a terrible influence or a great grandmother as I snuck my grandson Zachary out of school for the afternoon so he could cheer on the home team. The weather was perfect, the seats were good and we were all set to start a winning season. Unfortunately, the Phillies weren’t quite as ready as we were and lost to the Kansas City Royals. As the crowd streamed out at the 7th inning stretch, my grandson refused to lose faith and declared, “I am a Phillies fan and I am staying!”
We did have a great chance to check out the new permanent gluten-free concession stand in Section 136. What a boost to the Phillies experience! We had delicious hot dogs and cheesesteaks and watched as people who were thrilled to find gluten-free food so available ordered pizza and chicken fingers. Sweet Christine’s furnished brownies and other sweet treats, along with the hot dog rolls. Of course, you can get a gluten-free brew with that dog—Redbridge beer and Woodchuck Hard Cider.
No matter what the final score, it always is a good day at the ball park. With more gluten-free food, it is even better.
See you at Celiac Awareness Night! You can grab your tickets here.
Two northwestern sections of Philadelphia were jumpin’ on Saturday, January 26th. Weavers Way, the fabulous community owned co-op that has made a name for itself in the Philadelphia region, held its annual Gluten-Free Day from 12 until 4 p.m.
This year, the savvy folks at Weavers Way expanded the event to include both their Chestnut Hill and Mt. Airy stores. Bettina de Caumette, Outreach Coordinator at Weavers Way, put the day together to everyone’s delight. Frigid weather aside, the day seemed just right to explore the wonderful world of gluten-free goodies.
The National Foundation for Celiac Awareness (NFCA) was on hand in both locations to discuss the gluten-free diet and to go beyond that to the underlying need for this special approach to the menu: celiac disease and other gluten-related disorders.
The NFCA team was pleased and proud to have two long-time, stalwart and extremely knowledgeable volunteers distribute literature and answer shoppers’ questions. Becky Lownes Urbano returned to the post she manned last year in Chestnut Hill. Annsley Klehr took a brisk walk from home to spread the word in Mt. Airy. Tema Esberg, a new member of the NFCA volunteer team, joined Becky in Chestnut Hill.
Chestnut Hill store manager Dean Stefano and Mt. Airy store manager Rick Spalek each donated an enormous basket of gluten-free products for a raffle benefiting NFCA. One lucky winner from each store went home with a bounty of delicious treats that will have them trying out new items and enjoying old favorites. For our part, NFCA is grateful for the donation that will go toward our educational programs.
On a normal Saturday, about 1,100 people pass through the doors of Weavers Way in Chestnut Hill. That number swells significantly on Gluten-Free Day and this year was no exception. I don’t know how many came to the Mt. Airy store but it certainly was a steady stream of eager shoppers, many with questions about gluten-free food and celiac disease.
In short, it was great! The NFCA team is looking forward to Gluten-Free Day 2014 at Weavers Way!
It’s time for NFCA’s Appetite for Awareness!
The NFCA Team is very excited about the 2012 edition of this signature event. I can’t wait to see which doctors are paired with which restaurant to prepare and offer true gluten-free delights to our guests. Appetite for Awareness brings out the gourmet in most of us as we table hop between the booths of some of the best restaurants in the Greater Philadelphia area.
Today, I learned that there will be about 60 exhibitors who are ready to highlight the latest gluten-free products and distribute educational materials to all attendees. Add the Beer Garden with flat screen TVs and “the game,” the Children’s Pavilion with games for the whole family, and cooking demos for the Julia Child in each of us, and you have quite an afternoon!
How does the NFCA Team make all of this happen? The short answer is, we don’t. Well, more correctly, we don’t do it alone. Each year, a small army of volunteers puts on their Appetite for Awareness T-shirts and jumps in to help.
Our guests will meet them all, from manning the registration desk to helping at the NFCA Shop to selling tickets for the drawings (including a lease on a Mercedes-Benz!) and much, much more. This volunteer corps is an essential ingredient in the success of each and every Appetite for Awareness that NFCA has held over the years.
This year, over 75 volunteers plus a cadre of students will take the floor to make this the best event ever. Some are first-timers who will be amazed and others are old hands who know the ropes and always are enthusiastic.
If we held a contest for the volunteer who traveled the greatest distance to get to the Historic Strawbridge Building, Cecelia Bonaduce from Baltimore probably would win (plus, she originally hails from California). Most years as an Appetite for Awareness volunteer? Probably Karen Dalrymple and Donna Sawka. Husband and wife teams — Jen and Kenny Arters, Judy and Mike Paul, Eva and Marv Schlanger. More family ties — Patti and Jessica Townsend, Amanda and Sam Beeler, Jody and Bruce Finkel, Sandy and Rachel Cogan, Eileen and Jim Grady. And, organizing this whole team—Julie Cooper. Amazing!
Looking forward to a great time!
In July, I had two golden opportunities to celebrate the generosity of personal friends and friends of the National Foundation for Celiac Awareness (NFCA).
We all love a party but some of us are really good at throwing one of the biggest parties in town. Meet Chris Auman, a member of the NFCA Team who has worked on our events since the day she walked in the door years ago. Chris has been a huge part of the energy and organizational power behind Appetite for Awareness as this fun-and-food-filled event has grown from an intimate evening in a private home to the festival that we enjoy today.
Right now, Chris is organizing the Marketplace for Appetite for Awareness 2012 being held on September 23rd at the Historic Strawbridge Building at 8th & Markets Streets in Philadelphia. If you want to have loads of gluten-free fun, come on down. Chris will be ready for you.
On July 27th, we held a party of a different kind when we celebrated Chris’ birthday. Alice Bast, Chris and I headed to Cantina Feliz in Fort Washington where we enjoyed a delicious gluten-free Mexican meal. The gazpacho with watermelon, tomato, cucumber, a house specialty, was a big hit at the birthday table.
On Sunday, July 29th, I made my way from my home in Blue Bell, PA to the absolutely fascinating home of Jennifer and Ken Arters in Downingtown, PA. Jen was holding an in-home shopping spree benefiting NFCA. Featuring jewelry from Stella & Dot, along with fabric purses and bags of all kinds from Thirty-One, this trunk show was like Christmas in July, as far as I was concerned. Temptation was everywhere. Yes, I succumbed!
Jen prepared delicious gluten-free treats from tasty miniature meatballs to fabulous mini red velvet cupcakes. And, yes, I succumbed.
Jen and Kenny showcased these delightful gifts in their 1850s house lovingly being brought back to its former glory. Restoration is hard work designed for talented and skilled people with a passion for making things better. Jen and Kenny have an equal passion for raising awareness of celiac disease. All of us at NFCA are grateful for their spirit of volunteerism and their dedication to the celiac cause. You will see them at Appetite for Awareness – helping out, of course.
Celiac Disease Information, Please!
Even the slightest brush with celiac disease and other gluten-related disorders can bring questions to mind. Lots of questions. The first question usually is … where do I turn for the answers that I need right now?
Most of you know that all of the information on www.CeliacCentral.org is available free of charge and to all comers. The site covers lots of topics from “What is Celiac Disease?” to “Can I eat spelt on a gluten-free diet?” to getting the scoop on the latest research in the field.
But, from time to time, you just need to ask someone who can and will respond to you directly and personally. Enter the marvelous ladies who have volunteered to answer the questions coming to NFCA via info@CeliacCentral.org.
Last month while I was visiting my family in Virginia, I slipped away to Washington, DC, to have lunch with one of these amazing women. Gayle Wald has been ‘manning’ the info@CeliacCentral.org account for over three years, come rain or come shine. She has helped to train the new kids on the block and, undoubtedly, has dispensed answers and information to hundreds of writers with questions about their own situations.
When Gayle is not helping fellow celiac patients, she works as a professor at The George Washington University in Washington, DC, and is Chair of the Department of English there. She lives in the District with her husband and son.
At Gayle’s suggestion, we had a healthy and delicious lunch at Founding Farmers, a restaurant specializing in farm-to-table fare just a few blocks from the White House vegetable garden. And, yes, they serve gluten-free dishes.
Unbelievably, this was the first time that I had met Gayle personally. It was great fun getting to know the woman behind the email address. The National Foundation for Celiac Awareness (NFCA) is extremely fortunate to have the benefit of her experience, along with the true care and concern that all of the ‘Women of Info@’ bring to this program. I truly look forward to meeting each one personally, a neat trick as they live across the country from Pittsburgh to Wyoming to Iowa and beyond.
So, when you send NFCA an email, you will encounter one of these very special volunteers:
Rebecca Lownes Urbano
A huge thanks to them all –and to Joanne Gallagher for keeping their “on duty” schedules straight. They are maaahvelous!
New Year’s Day may be the time for making resolutions, but the breath of spring in the air makes all of us want to live healthier lives as we get ready to be outdoors more and more. Enter, the health fair!
Two weeks ago, I had the pleasure of participating in two such events, each one targeting a very specific audience.
Sunday, March 25, brought the annual “Education Day” at The Children’s Hospital of Philadelphia (CHOP). Called Growing up with Celiac: A Forum for Parents and Children, this information-packed event was organized by Dr. Ritu Verma, pediatric gastroenterologist and Section Chief of CHOP’s Gastroenterology and Nutrition group. Dr. Verma leads the Center for Celiac Disease at CHOP and also serves as a very active member of NFCA’s Scientific/Medical Advisory Board. This lady wears many very important hats!
The conference covered a wide range o f topics ranging from ‘The Genetics of Celiac Disease,’ with Curt Lind of CHOP, to ‘Celiac + Social Media,’ with Priyanka Chugh, and ‘Bone Health in Children with Celiac Disease,’ with Babette Semel, PhD.
Our own Alice Bast spoke about a topic that is grabbing national attention as students struggle with the gluten-free diet in school and on college campuses. In ‘Gluten-Free Goes to School,’ Alice outlined the perils and some solutions for this important facet of a student’s daily life.
By the way, there was loads of delicious gluten-free food provided as samples by vendors and also for a plentiful breakfast and lunch.
A big thanks to NFCA volunteer Sarah Terley, who passed out information to parents and kids coming to our table.
Thanks to the discerning palate of my associate, Kristin Voorhees, we ended the day with a delightful meal at Garces Trading Company at 1111 Locust Street in Philadelphia. The Garces Restaurant Group has completed NFCA’s GREAT Kitchens program and, as a result, we were confident that the gluten-free items on the menu really were produced in a safe manner. Very reassuring. Anne Lee of Schar USA joined us as we enjoyed a delicious gluten-free meal, including fabulous desserts. The quite decadent Chocolat is to die for!
On Saturday, I joined the group at a free Men’s Health Fair at The First Pentecostal Church in Lambertville, NJ. Organized by Jonathan Bridges, a church member and owner of Wallingford Farms, this preventive health collaboration between the church community and healthcare service providers offered lectures plus screening for a variety of the basics: hypertension, hyperglycemia, BMI and more. Many thanks to Karen Dalrymple and Donna Sawka of the Greater Philadelphia Area Celiac Support Group for coming out to spread the word about celiac disease, gluten-related disorders and the gluten-free diet.
So…great weather, interesting information, delicious food…an all around GREAT experience!
Some days, you just get lucky.
Two weeks ago, I had a fabulous chance to consult with an expert, learn something new and enjoy a delicious dinner in very good company.
The saying goes, if you want to learn about something, go to the source. Not often does the source come to you.
While traveling through the area on business, Scientific/Medical Advisory Board member Dr. Daniel (Dan) Leffler of the Division of Gastroenterology at Beth Israel Deaconess Medical Center in Boston, graciously took the time to swing through Philadelphia to meet with us. As a result, Dr. Richard Mandel, NFCA Board of Directors member, and I enjoyed a delightful dinner with Dan in an atmosphere where we could catch up on the latest research and exchange ideas about the state of celiac disease today.
Thanks to some sleuthing by my associate Kristin Voorhees, we landed at Devon Seafood Grille on Rittenhouse Square in Philadelphia. Let me tell you, it is the place to be!
Because Dan had to catch a plane that evening, we dined early — 4 PM. No, it wasn’t the Early Bird Special. It seems that Devon serves all day, so no worries there. The best part is that they have a separate and quite complete gluten-free menu. Actually, many of the items on their “regular” menu are gluten-free. And, the waiter was totally knowledgeable about what was gluten-free and what was not, down to the spices used in various dishes. Impressive and reassuring!
So, after diving into oysters selected from the current best across the country and enjoying the freshest of splendidly prepared seafood, we got down to the “what’s what” part of our get-together.
The big news is all about terminology.
That’s right, there are changes afoot concerning how we define and refer to celiac disease and other related disorders. Called the “Oslo definitions,” a newly released document composed by a team of 16 physicians from seven countries outlines the preferred terms, along with terms that they assert don’t best describe the condition under discussion. That’s right; some are in and some are out.
The goal here is to develop a common language which the entire scientific, academic and healthcare communities, along with the general public, can use to refer to this range of illnesses now going under a myriad of terms that can (and do) have different meanings to different people.
Note: The name “Oslo definitions” comes from the most recent International Coeliac Disease Symposium held in Oslo, Norway in June 2011 where new definitions were introduced and discussed. The review continued after this meeting resulting in the formal document that was released in February 2012. Yes, it is hot off the presses.
While not the law of the land at this point, this consensus document has the support of leading experts worldwide, including Dan Leffler who authored the paper on behalf of the impressive group based on months of studied consideration by these medical experts and researchers, all focused on the field of celiac disease.
No, I am not going to list all of the definitions here as there is quite a list of terms, most familiar to all of us, along with some that are not part of the lay person’s daily vocabulary. (Yes, that would be me.) Should you read the document, you will see gluten sensitivity and gluten intolerance joined with other descriptors such as latent celiac disease, gluten ataxia, pediatric classical and more.
The document defines celiac disease (or, as they write it in Europe, coeliac disease). Here it is: “a chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.”
It also recommends a new way to refer to the spectrum of illnesses that involve gluten. “‘Gluten-related disorders’ is the suggested umbrella term for all diseases triggered by gluten and the term gluten intolerance should not to be used.”
There is much more to this story, of course. You can get a quick summary in NFCA’s Research News.
In short, this was a very satisfying and interesting evening. We enjoyed delicious gluten-free food and learned about the latest thinking in the field of celiac disease.
Chalk one more up for “a good time was had by all”!
- International Physician Task Force Identifies Definitions for Celiac Disease and Gluten-Related Disorders
- What is Non-Celiac Gluten Sensitivity?
- Teleseminar: How Well is Your Digestive System Working? (Featuring Dr. Dan Leffler)
Some days, it seems that surveys are everywhere. We are surrounded by a knowledge gap that surveys are meant to fill allowing all of us to move ahead to a better world. Some seem immensely trivial and others of grave importance.
Over the past few weeks, I have been involved in the world of surveys. Specifically, I have been working on a survey targeting anyone and everyone who is gluten-free. The point is to find out what experiences the survey taker has had with medication. By that, I mean medication of all sorts—prescription, over-the-counter, supplements, the works.
Yes, this survey is part of NFCA’s work on the U.S. Food and Drug Administration (FDA) grant to study Gluten in Medications. We have written about this study on our CeliacCentral.org website, in our newsletter and more.
Right now, we are engaged in making sure that the distribution of this survey is as broad as possible so that we certainly gather as much insight as we can. The more responses we get, the more information we will have and, therefore, the more drugs we can test for gluten content and the more targeted that testing can be to reap the best, most noteworthy and effective results.
And, yes, this survey falls into the “gravely important” category.
So, I have been poring over lists of groups that are good candidates to distribute the survey. The NFCA staff has been sending out email notices about the survey like crazy and, then, regrouping to expand and improve our communications plan.
We know how important this research is to all who are gluten-free and who want to be certain that, in the process of trying to get well or stay healthy, they are not sideswiped into illness inadvertently. Whether someone takes one pill a day or 16, that individual doesn’t know how much gluten, if any, she is absorbing.
We also know that pharmacists are eager to help their patients. They need to know what is in the medication they are dispensing. People ask them questions; they want to know the answers. NFCA’s GREAT Pharmacists online training program is one way that we are moving the ball along that learning curve. This survey and the research that comes out of it will advance the Gluten in Medications program in a positive fashion.
So, back to the lists. This is a one-in-a-million chance to get it right!