Posts tagged ‘nancy’
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!
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!
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.
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, 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!
The National Foundation for Celiac Awareness has accomplished a lot in 2011, but I wanted to know what my fellow co-workers thought was their biggest breakthrough of the year.
For Beckee and Jennifer, our gluten-free industry team, the top highlight was adding NFCA’s GREAT Kitchens training to US Foods Resource Advantage Program. The program offers discounts and deals on various resources for the foodservice industry. Thanks to Beckee and Jennifer’s hard work, more foodservice operators, including restaurants and dining halls, can now have access to gluten-free training through GREAT Kitchens at a discount.
Beckee also is proud of the increased availability of safe, gluten-free options for students from K-12 all the way through college. NFCA’s GREAT Schools program is aiding that cause by teaching dining hall and cafeteria staff how to properly prepare gluten-free meals.
For Nancy, helping NFCA secure the landmark FDA grant for our upcoming Gluten in Medications study was her biggest accomplishment. The $50,000 grant provides much-needed funding to pioneer this new area of celiac disease research, and NFCA is thrilled to be leading the charge!
Alice echoed Nancy’s sentiments about the FDA grant, as it was a huge milestone in NFCA history. Alice also named the Philadelphia Award as her top achievement in 2011. “This is one of the most prestigious awards in Philadelphia, and it brought front page coverage to the NFCA and celiac disease,” she noted.
For Alice, the award wasn’t an end result, but a jumping off point to bring even more awareness to celiac disease and gluten-free needs.
Kristin pointed to the many collaborations and connections she formed in promoting NFCA’s Primary Care CME:
“In 2011, 306 U.S. primary care providers received training from NFCA’s Primary Care CME. Medical experts indicate that primary care physicians have the opportunity to diagnose 18 new patients per year. Based on this statistic, our records demonstrate that NFCA has had the opportunity to directly impact the lives of 5,508 patients. NFCA looks forward to continuing our professional education efforts in 2012,” she said.
Spreading the word about the CME involved a number of helpers in 2011. Quest Diagnostics disseminated more than 9,000 promotional postcards to primary care providers; individuals and support group leaders distributed 2,800 postcards to local healthcare professionals; and NFCA, along with physician advocates and celiac champions, sent 2,000 postcards to medical conference, clinics and lunch meetings extending as far as Hawaii and Norway!
Whitney cited her work with the Asheville Independent Restaurant Association (AIR) as her biggest accomplishment of 2011. She stepped up at a moment’s notice and flew to Asheville, NC, to lead a gluten-free training course for 25 foodservice professionals. More than 20 restaurants in this popular tourist destination are now GREAT-trained and ready to serve gluten-free food.
For me, Kids Central was my baby, and like a proud mama, I was happy to see it take flight in October. The new microsite accomplished much of what we originally set out to do, and I couldn’t have done it without the help of many, many friends in the celiac and gluten-free community. I’ve met wonderful parents, super kids and amazing teens who were willing to share their stories and gluten-free recipes. We’ll continue to add new articles and advice as we move into 2012. In fact, I’ll be posting our first Ask the Pediatric Gastroenterologist Q&As today!
Wishing a happy and healthy New Year to all of our friends and fans!
In the 60s, Betty Friedan published The Feminine Mystique, sparking the beginning of “second wave feminism,” better known as “women’s lib.” In the 70s, Gloria Steinem brought us Ms magazine and a title all our own as she pushed the Equal Rights Amendment. The 1980s saw Geraldine Ferraro join the national ballot as the first woman vice presidential candidate. Women’s History Month was added to the US national calendar in the 1990s, with women’s history courses flooding college campuses. This century has seen women explore space, break sports records, and seek the presidential nomination. As the saying goes, we have come a long way.
As it turns out, women have had power all along. In fact, in the healthcare arena, women have 80% of the power—or more!
Here’s the story.
On November 15th, I had the privilege of attending a conference entitled Women’s Health in an Era of Change. Hosted by Katherine Keefe, Chair of Dilworth Paxson law firm’s Health Care Group, the discussion examined the impact that the healthcare reform bill is having on women. Lynn Yeakel of Drexel University’s Institute for Women’s Health and Leadership led the panel discussion that included Dr. Owen Montgomery of Drexel University’s College of Medicine, Anne Morrissey of AmeriHealth and Katherine Keefe.
We all learned a lot.
One statistic that jumped out at all of us is that at least 80 % of all healthcare decisions are made by women. Got that? At least 80%. Women make these decisions for themselves and for their families, including extended families of aging parents and siblings who need assistance– the whole deal.
This means that women have the power to move that mountain that will help keep our families safe. Women can demand better care, more attention, safer products. For those with celiac or gluten sensitivity in their families, this means both an opportunity and a responsibility to seek out that diagnosis that has been overlooked, to insist that the doctors get educated about celiac disease and gluten sensitivity and to get those family members tested, like it or not.
Another statistic we learned, and this time a disheartening one, is that 50% of the uninsured population is women. The healthcare reform act will move these uninsured women and their families into being covered. This means a huge impact on the primary care physicians who will be treating the newly insured.
Dr. Montgomery suggested that reform will initiate a new era with a team approach to family medicine. Right now, there simply are not enough primary care providers in the U.S. to manage the added millions of patients who will enter the healthcare system. The very practical and viable solution is to expand the role of healthcare professionals by adding more nurse practitioners, midwives and physician assistants to the primary care team. Doctors will have to practice in a more collaborative way, which means that there will be more hands available to manage the patient’s health. This approach has been embraced by Drexel and by the American College of Obstetricians and Gynecologists (ACOG).
So, it is back to the women. All of this means that women as the key decision makers will have an even more active role in managing the “continuum of care” for themselves and their families.
Here is to your good health and to the best use of the power that is in the hands of American women.
Get empowered! Learn more about celiac disease and women’s health.
Such a buoyant cry of delight!
This past weekend, I visited my family in Virginia which really means I went to see my two small grandsons: Max, age 2 ½, and Mason, 15 months. Yes, they are terribly cute and amazingly clever little boys!
To keep Max amused while I was making lunch, I suggested that he work on a puzzle. It was one of those lovely wooden ones with farm animals and tractors.
Max went about his business of puzzle assembly and I turned to the niceties of kids’ lunches. All quiet on the home front.
Suddenly, I heard, “Nana, I did it!” Hands raised as if celebrating a touchdown, Max had a moment of total joy and triumph.
If you can believe it, his accomplishment made me think of all of the folks who have been struggling with undiagnosed celiac disease and, having finally learned the cause of their suffering, are moving into a reclaimed gluten-free life. I guess it was being in the kitchen that brought this association to mind.
We all know that this is not the easiest transition to make. After acceptance comes the search for how best to live happily in a new world. Lots of questions about what is gluten-free, followed by the search for tasty and healthy products. At first, most women wonder about the hazards of dining out and wonder if they will ever again enjoy a lovely evening on the town. Men want to know what beer they can drink. Yes, these sound like stereotypes, but based on questions that come through our info line (firstname.lastname@example.org), they’re true!
Before long, with help, the gluten-free diet becomes routine, and life improves. And, one day, there comes a moment of realization that, in fact, a shift has been made to a “new normal.” In short, they did it.
Lunch over, Max enlisted me to “play soccer.” His parents are athletes, so Max has been kicking the soccer ball around since he could walk. He has a child-sized goal and loves it.
So, out we went to pass the ball around and see how we would make out. Within minutes, Max had the ball in the goal.
You guessed it. “Nana, I did it!”
What is your “I did it!” moment?
If you have a personal victory related to your health recovery, whether it’s a new outlook, a change in habits or a successful business venture, share it on the National Foundation for Celiac Awareness’ Celi-Acts page.
If you have a question about the gluten-free diet, submit it to Ask the Dietitian.
The weather outside’s delightful!
That didn’t deter a band of stalwart volunteers from representing the National Foundation for Celiac Awareness (NFCA) at the first Wheat-Free & Gluten-Fee Day at Weavers Way Co-op on Saturday, January 29th.
Joanne Gallagher, Annsley Klehr and Nicole Seitz slogged their way through snow and slush to arrive at the Weavers Way location in the Chestnut Hill section of Philadelphia. Loaded down with information about celiac disease and gluten intolerance, these three knowledgeable gals set up camp from noon until 4 PM in this lovely new store.
What a day!
Well over 1,000 Weavers Way members and shoppers swarmed the store in spite of the weather and the related parking chaos on Germantown Avenue. As it turns out, a large number of co-op members visiting that day are on special needs diets. NFCA’s information about the gluten-free diet fit the bill perfectly. Joanne reported to the store manager, “We met so many of your members who live with restrictive diets and were interested in the resources NFCA has to offer.” Truly gratifying!
Joanne, Annsley and Nicole are all personally familiar with living a gluten-free lifestyle and were able to discuss the “ins and outs” of shopping for gluten-free food in today’s marketplace. The Weavers Way staff was very accommodating and friendly, making it a pleasure to be there.
Store visitors had lots of gluten-free treats to try, with free samples from a variety of suppliers including local Amaranth Bakery from Lancaster, PA, as well as national manufacturers like Glutino, Nature’s Path, Mary’s Gone Crackers and Blue Diamond Crackers. They also offered a selection of wheat-free and gluten-free dips and spreads from Weavers Way’s acclaimed Prepared Foods Department.
Weavers Way topped off the Wheat-Free & Gluten-Free Day celebration with a fabulous raffle basket full of gluten-free delights from the store. The proceeds went to NFCA to help us meet our mission of gaining a diagnosis for 1 million Americans by 2015. We are most grateful!
The event was so successful that Kim Spelman-Hall, Weavers Way Chestnut Hill Store Manager, plans to hold another event like this in the future. “Our celiac shoppers were very pleased.” NFCA will be there!
It was a GREAT day!
Weavers Way Co-Op has three locations:
- 8424 Germantown Avenue
Philadelphia, PA 19118
- 559 Carpenter Lane
Philadelphia, PA 19119
- 2129 72nd Avenue
Philadelphia, PA 19138
If you’re planning a gluten-free event, submit the details to NFCA for a free event listing on CeliacCentral.org.
There are a variety of ways to help the celiac cause. Submit NFCA’s Volunteer form today to find out more.
It may be December. It may be years since I carried a knapsack. But last week, I went back to school. And it was fun!
On Dec. 8, members of the Methacton School District in suburban Philadelphia held a Celiac Disease Workshop for parents of grade school children. The goal was to raise awareness of celiac disease and to answer questions parents have about the gluten-free diet. Naturally, I offered to help out and share some materials from the National Foundation for Celiac Awareness (NFCA).
Two very energetic and enthusiastic women with a passion for telling the world about celiac disease organized this evening event. Marykay Lojewski and Caren Meyer both have children at Worcester Elementary School.
Marykay has celiac disease and kicked off the evening by telling her very poignant story as she lived for years getting sicker and sicker as she sought a cure for everything from constant nausea to violent stomach pains to anemia. (Sound familiar?) Marykay even shared her Personal Story on NFCA’s website.
Caren is a holistic health coach with extensive knowledge of the gluten-free diet. Caren answered all sorts of questions relating to healthy living and going gluten-free.
Marykay, Caren and I covered the basics of celiac disease, the most common symptoms, what people on a gluten-free diet can eat and what is taboo, and let everyone know about NFCA’s activities and programs so they can find more information and support. Between the three of us, there were tons of handouts that workshop attendees took home.
Most interesting was the response from the folks participating in the workshop. Several of them have been wondering about their own symptoms, from migraines to neuropathy to “brain fog.” This workshop gave them a chance to share their concerns and to get tips on how to move forward.
The workshop wasn’t all talk and no play. Marykay and Caren made sure everyone attending learned that gluten-free food can be delicious and healthy. Thanks to Jacquelyne Rennie, owner of JayBee’s Café of Skippack, PA , we enjoyed fabulous gluten-free treats.
An added treat came from Marykay’s chef sister-in-law: Quinoa Salad! Fortunately, I was able to get the recipe, and I’m sharing it with you fine folks. (See below.)
Marykay and Caren plan to hold another workshop in 2011. In the meantime, we all can make that New Year’s resolution to eat in a more healthy and nutritious way, including those who are gluten-free!
from Chef Helen Lojewski
Gulph Mills Golf Club
1 cup quinoa (uncooked)
1 small cucumber sliced and cut in quarters
1 -1 ½ cup cherry tomatoes (halved)
½ small red onion chopped
Salt and Pepper to taste
Apple Cider Vinegar to taste (about 2 T)
Cook quinoa (see below).
When quinoa has cooled, gently mix in remaining ingredients.
Serve at room temperature.
How to cook basic quinoa:
Bring 2 cups water and 1 cup quinoa to a boil.
Cover and simmer for 15 minutes.
(Note: Some quinoa requires soaking before cooking. See individual recipes.)