by Barbara Sherf
It’s been a heck of a week for Chestnut Hill residents Alice Salomon Bast, founder and executive director of the National Foundation for Celiac Awareness (NFCA), and Dorothy Binswanger, who serves as president of the board.
Bast, who suffered a stillbirth, several miscarriages, gastrointestinal problems and a host of medical issues as a result of celiac disease, was named the 2010 winner of the Philadelphia Award and was profiled in a front-page article in the Philadelphia Inquirer on Sunday, April 10.
“My yoga instructor said he cried while reading about my experience,” Bast said. “He said he hoped he was making a difference in my life so that I could continue my work.”
Sitting in the Chestnut Hill Coffee Company for an interview last week, Bast, 50, said the publicity surrounding the award caused a spike in hits to the NFCA website (www.CeliacCentral.org) and a host of emails from individuals who suspected they might have the autoimmune disorder.
“The stories are heart-wrenching,” she said. “To hear from people who have suffered for years, like I had, and to realize a simple blood test could change their lives, is really hard to imagine. That’s why our goal is to have one million people diagnosed by 2015.”
Staying on message, Bast repeated that goal three times during the interview as Binswanger, her good friend, chimed in from time to time.
According to literature in their professionally designed packet, roughly one out of every 133 Americans has the celiac disease, but 97 percent remain undiagnosed.
One of them was Ed Snider, founder of the Philadelphia Flyers and chairman of Comcast-Spectacor. In a case study, he said he had been experiencing symptoms for 50 years and at one point had lost 25 pounds. Finally, he was diagnosed at the age of 72, now serves on the NFCA’s board and is responsible for nominating Bast for the Philadelphia Award.
The Philadelphia Award was established in 1921 by Edmund W. Bok to honor those who act in service “to the best and largest interest of the community in which Philadelphia is the center.” Bock, an editor, writer, community activist and philanthropist, is perhaps best known as editor of the Ladies Home Journal. Recipients have included H. Fitzgerald “Gerry” and Marguerite Lenfest, Judith Rodin and Ernesta D. Ballard.
Bast thought she was going to the Independence Foundation in Center City to pitch the board on funding her NFCA work, but instead a roomful of dignitaries greeted her with the news and applause.
“I cried when I learned I won,” she said. “When I got outside I was so frazzled I couldn’t find my car, and once I did I immediately hopped into it and called Dorothy.”
It is hard to imagine that this 5’9” blonde who looks fit and vibrant was severely underweight, tired and suffering from fatigue and a host of other medical issues for six years. But Binswanger picked up the nightmarish saga.
“She was a mess,” Binswanger confirmed. “Friends would ask me if she had anorexia she was so thin. We would take walks down by the Valley Green Inn and she would tire easily. She was frustrated and I was frustrated for her.”
The pair met through their husbands who were schoolmates at Germantown Academy. David Binswanger is CEO of the family-owned Binswanger of Philadelphia, a real estate consulting firm, and William Bast is the founder and COO of Netreach, an Internet content management company based in Ambler.
“We would play mixed tennis as couples on Tuesday nights,” Binswanger said. “Then we would go to dinner at McNally’s, and she would have a salad and drizzle plain lemon juice over it because so many of the dressings had preservatives and gluten in them. But that has changed.”
The number of gluten-free products went from 936 in 2006 to 2,675 in 2010. Thousands of restaurants offer gluten-free items, and gluten-free snacks are even offered at the major Philadelphia sports venues, thanks to Bast and her power of persuasion.
Binswanger stood by her friend as Bast went to see 22 doctors before a veterinarian finally suggested that her symptoms sounded like celiac disease – a condition seen in some dogs as well as humans.
The disease is triggered by the consumption of a protein called gluten, which is found in wheat, barley and rye. Individuals with celiac disease cannot absorb these nutrients that damage the villi or tiny finger-like projections that line the small intestine. The result can cause malnutrition, several forms of cancer, thyroid disease, osteoporosis, infertility and the onset of other autoimmune diseases.
Binswanger, who hosted the first fundraiser and tasting of gluten-free products at her home just before Halloween in 2004, has since had a family member die because his celiac disease went undiagnosed.
“My brother-in-law suffered from liver and colon cancer and died at the age of 60,” Binswanger said. “We later found out that he had celiac disease. My nephew suffered from skin issues for years and got tested, and he tested positive. Now he is on a gluten-free diet and is doing well.”
Bast credits Binswanger, a former sales and marketing executive, with bringing a creative flair to that first event.
“She created the Celiac Haunted House,” she said. “Her four children got involved with one son lying in a coffin at the entrance holding a loaf of bread and a sign saying ‘I’m still waiting for my diagnosis.’ Then a vampire appeared with a pint of blood with information on how a simple blood test could diagnose the disease.
“A skeleton held a sign saying ‘I had celiac disease.’ But the best part was watching these adults, some who had celiac and some who didn’t eating these gluten-free foods. They loved them and even left with desert.” Lee Tobin, the creator and master baker of Whole Food’s gluten free product line provided food for the event. From there, the ball kept rolling on and on.
“Some people started seeing gluten-free and thought it was a fad, but it’s not. If you have celiac disease it is a lifelong diet. Even the smallest amount of gluten can trigger a reaction. A gluten-free diet is the only treatment available.”
Bast travels the country giving talks at national meetings for pharmacists, food chemists, chefs and the largest natural food show in the world. The award and $25,000 prize she will be receiving on May 17 at the Philadelphia College of Physicians is specifically being given for the foundation’s educational efforts, which include its website with a myriad of resources. The prize money will go back into the NFCA coffers.
Bast was the first to create online courses with continuing education credits held out as the carrot for physicians to bite.
A graduate of the University of Pennsylvania, Bast went to work in business and marketing for medical companies before starting a family. Her first baby, Elizabeth, was born in 1987 and weighed in at close to a healthy 8 pounds (The now 23-year-old is going to medical school next year). But then things turned around, and her second child, whom the couple named Emily, was stillborn, weighing in at just below 7 pounds. Then there were several miscarriages before daughter Beatrice Linnea was born in 1993, weighing in at a mere 3 pounds.
Later she would learn that while someone can be a carrier of the gene, it can remain dormant until a stressful event, like pregnancy, surgery or severe emotional distress triggers the symptoms.
Once she was diagnosed and on a gluten-free diet, her life had changed so much that she felt she had to share the information with others and educate the medical community. With some help, she applied for and received a $100,000 grant from the National Institutes of Health with the goal being early diagnosis through education.
Her creativity and marketing background kicked in as she came up with the idea of partnering with Quest Diagnostics, a medical-testing firm, to help get brochures into medical practices, and then the patients started asking doctors for the simple blood test. After that she started going after the food markets and restaurants encouraging them to carry more gluten free products.
“Locally, John Ingersoll of the Chestnut Hill Cheese Shop was a partner from day one,” Bast said. “He is one of the first who stepped up, and his wife is a physician, so she came on board as well.”
The NFCA is launching a GREAT (Gluten-Free Restaurant Education Awareness Training) Business Association to pay for the foundation’s free services to patients. Fees range from $250 to $7,500 depending on a manufacturer’s annual sales. The online course to train a restaurant costs $200.
She has made inroads with Wegman’s Supermarkets and Walmart and is now working with the pharmaceutical industry to develop gluten-free medications.
The NFCA holds an annual “Appetite for Awareness” competition among big name restaurateurs and chefs in October at the Philadelphia Navy Yard.
As the interview reaches the one-hour mark, it becomes clear that Binswanger and Bast are the kind of friends who finish each other’s sentences.
“When we go to visit with a prospective donor we introduce ourselves as Alice in Wonderland and Dorothy of Oz – that way people remember our names,” Binswanger said, as the pair laughed while applying lipstick before posing for a photo.
For Bast, her storybook tale has had a happy ending.
“I feel great and I feel blessed to be able to do what I am doing and to have so many special people like Dorothy in my life,” she added.
“Alice is all about bringing out the best in people and giving to everybody,” Binswanger said. “She gives credit to everybody else, but I’m excited to see her in the spotlight receiving this award.”
The National Foundation for Celiac Awareness website is www.CeliacCentral.org.