A Little Word On Living Free

"We're so fortunate," Celiac Disease Center Executive DIrector Carol Shilson said, "That this [NYC Launch Party] popped up…that people around the country are seeing the work our center does."

“We’re so fortunate,” Celiac Disease Center Executive DIrector Carol Shilson said, “That this [NYC Launch Party] popped up…that people around the country are seeing the work our center does.”

There are no shortage of parties on a Friday in New York City – after work lets out in Midtown, the streets are thick with people looking for an ice cold cocktail, a bite to eat, a place to undo their shirt-cuffs and roll up their sleeves.

However, for those suffering with Celiac Disease, gluten-intolerance, or other allergies, finding a safe and comfortable place to relax can be a surprisingly stressful and challenging experience.

Gluten-free foods are becoming ubiquitous – popular, even – as the diet gets trend status from major publications such as Eating Well, health-food bloggers, and producers smacking the label on everything and anything they can.

So it may surprise you that there has never before been a fundraising party in the Big Apple to support one of the major research centers for Celiac Disease. That changed in mid-October, when life coach Danielle Mund hosted the first ever fundraising event in NYC, the “NYC Launch Party” to support the University of Chicago Celiac Disease Center.

As a board member, it’s her job to raise money for the center. But the cause is close to Mund’s heart. When she was diagnosed with Celiac in 2011, it was an even more difficult diet to embrace than it is today, and she found few resources to help her adjust.

“Two years [after the diagnosis] I still felt victimized,” Mund tells me during the event. While she was grateful to have an explanation for her symptoms, which has been misdiagnosed for years until she finally received a blood test, the lack of information and available food products was distressing.

While we chat, I am holding a thin slice of gluten-free Margherita pizza from Don Antonio’s Chef Roberto Caporuscio. It’s hard to imagine going to an event such as this and not being able to eat with everyone else.

Chef Carporuscio's daughter, Giorgia, serves gluten-free Margherita and Neapolitan pizza to hungry guests alongside chef Antonio Starita.

Chef Carporuscio’s daughter, Giorgia, serves gluten-free Margherita and Neapolitan pizza to hungry guests alongside chef Antonio Starita.

“It’s isolating, and it’s so lonely,” Mund agrees. Without a community to share with, or guidance regarding the gluten-free diet (currently the most effective way to manage symptoms associated with Celiac), the diagnosis did little to reprieve her unhappiness.

That’s when Mund discovered the Celiac Disease Center; a nonprofit organization offering free blood screenings – the single way to detect the disease – and sending care packages with gluten-free foods and educational information to those newly diagnosed.

“Our ultimate goal,” said Carol Shilsen, the Center’s Executive Director, “is a cure.” On the way to that, they’re “finding therapeutic intervention to assist with [the] gluten-free diet,” and searching for a “bio-marker for non-celiac gluten-sensitivity.” Their pioneering research is helping to improve the lives of those living with these conditions, and their efforts have not gone unnoticed.

For Mund, their support was exactly what she needed to regain control of her health.

The goals of the center are huge for others, like Mund, living with gluten-intolerance or Celiac. About 85 percent of them, Shilsen shared, are still likely undiagnosed. Because the Center receives no funding from the university, “we appreciate every penny.”

That’s why Mund, along with fellow life-coach Russell Terry, gluten-free tour director Lynn Mendelsohn, Elizabeth Schoenbach, and others, decided to hold a fundraiser for the Center. The evening generated a lot of pennies – more than $9,000 worth, all of which is going directly to the Center.

Both Russell Terry and Danielle Mund are living with Celiac disease - and it was this shared cause that brought the life coaches together to develop the NYC Launch Party to support the Celiac Disease Center.

Both Russell Terry and Danielle Mund are living with Celiac disease – and it was this shared cause that brought the life coaches together to develop the NYC Launch Party to support the Celiac Disease Center.

And while the gluten-free food offerings were vast and – of course – delicious – Mund emphasized the event’s goals to raise awareness for Celiac and generate funds for the Center.

“[The event was] about bringing people together to have a fun night…not about the food.”

From across the city, more than 300 people came to the event. Held at the trendy, intimate EVR Lounge in Midtown, the fundraiser had nothing of the clinical atmosphere so often conjured at health-based events. The DJ, live sets by performing artist A.J. Smith (who also has Celiac) and open bar sponsored by Devotion Vodka, set a lively, party-atmosphere for the evening.

An open bar sponsored by Devotion Vodka fueled the first hour of the event and enhanced the youthful, vivacious atmosphere.

An open bar sponsored by Devotion Vodka fueled the first hour of the event and enhanced the youthful, vivacious atmosphere.

The larger purpose of the event was never once forgotten. A speech by guest host Jenna Drew, Miss New Jersey, reiterated the message large and clear. For Drew, who’s pageant platform is raising awareness for Celiac, which she also has, events such as this are key to educating the public and building a strong, supportive community.

Raising awareness for Celiac disease has been Miss New Jersey's close-to-home platform during her reign.

Raising awareness for Celiac disease has been Miss New Jersey’s close-to-home platform during her reign.

Of course, gluten-free food fueled the evening, and the delicious offerings were loved and appreciated by all – even those not leading a gluten-free diet.

The pizza was an enormous hit, and it was gone in 45 minutes. Guests quickly moved on to dessert, and the Wink Frozen Desserts bar was a fast favorite. The three-person company based in Connecticut is churning out Top 8 free ice cream (The most common ingredients that cause 90 percent of allergic reactions, required by the FDA to be listed on all products). In addition to being free of milk, eggs, peanuts, tree nuts, soy, and wheat (and fish and shellfish, more obviously), Wink is vegan-verified, kosher, fat and sugar-free.

Coming soon: An interview with Wink Frozen Desserts' CEO Gabe Wolff, and a closer look at this fabulous free treat.

Coming soon: An interview with Wink Frozen Desserts’ CEO Gabe Wolff, and a closer look at this fabulous free treat.

You can go hard on an ENTIRE PINT, and rack up only 100 calories. That’s less than a large banana, ladies and gents.

The founder, Gabriel Wolff, developed his vegetable-based frozen dessert after being diagnosed with Celiac Disease and diary-intolerance right before entering college. He described the difficulty of finding foods that were both nutritious and satisfying, and of the shared challenge his sister-in-law experienced with her Type 1 Diabetes. (More on Gabe, and WINK, soon!)

It was the same sentiment Mund expressed. Food is a vital aspect of our social lives, and without that shared bond, it can be difficult and frustrating to participate in public events.

The two-story club was near to bursting with bodies, everyone there struggling with a dietary restriction of some type – or committed to finding solutions for those who are.

There were Parmesan crisps from Kitchen Table Bakers, free of gluten, wheat, sugar, and even naturally free of lactose – the lactose is broken down by enzymes in aged cheese, making it safe for the lactose-intolerant to consume.

Original Parmesan, Garlic, and Rosemary were some of the favorite flavors of the evening. This crisp snack was developed as a carb-free alternative for those following gluten-free or paleo diets.

Original Parmesan, Garlic, and Rosemary were some of the favorite flavors of the evening. This crisp snack was developed as a carb-free alternative for those following gluten-free or paleo diets.

Quinoa crisps from Goldbaum’s were available to take home in 100-calorie packs, and packages of Taste Up Foods miniature pies and cookies from Sun In Bloom flew off the table.

With my bag full of gluten-free goodies, including a sample of Bread Empire’s Lite frozen dosed with Celiac Disease, I finally met Schoenbach, a recent college graduate who found Mund and Terry while searching for a way to make a difference in the city. For her, the evening far surpassed her expectations. “I hope by next year,” she said of the turnout, “it’s double.”

Mund was also looking forward to the event’s future. “[I] absolutely want to make it an annual event,” she said as the evening began to wind down. In addition to ordering more pizza, and doubling attendance, the driven team behind the gluten-free evening plans on adding more sponsors, and may even host smaller events throughout the year.

Clearly, the event’s inaugural year was a success. Everyone involved expressed their gratitude for the generosity of the sponsors, and of their attendeeds. Many people gave additional money in order to participate in a gluten-free raffle basket. “I’m so honored that all these people gave [their] time and money,” Mund said.

The Center was thrilled with the event. Even a time-zone and almost 800 miles away, they felt the warmth and support brought together on their behalf.

Hundreds of people filled the club, all in support of Celiac awareness and research.

Hundreds of people filled the club, all in support of Celiac awareness and research.

“People are just really moved by what we’re doing,” Shilson observed. “We’re really lucky in that way, [and] so fortunate that this popped up.”

“Feedback was stupendous,” recounted Mund later. “Everyone seemed surprised that we were able to pull off something so big–and that it was actually fun!”

Mund, Terry, Mendelsohn, and Schoenbach proved without a question of a doubt that living with a food allergy, intolerance, or dietary-restriction doesn’t have to be lonely – it doesn’t have to be negative. For those passerbys looking for a fun Friday night out in Manhattan, the energy emanating from EVR Lounge was something to be envied.

Until next year, when the Friends of the Center returns, I encourage you all to stay informed, and reach out. Gluten-free is not a weight-loss diet, and it’s not a trend. It’s a lifestyle many people adapt in order to live healthy, happy lives. Like any allergy or illness, it should be taken seriously. Learn more at cureceliacdisease.org.

Melanie

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