Social Media is a wonderful thing. If it weren’t for the global nature of Facebook, Twitter, Instagram and all those other sites I wouldn’t be meeting members of the gluten free community who are geographically removed from the New York Area. One of those folks I recently had the pleasure of connected with through Instagram is Lexie, the mastermind behind Cutting Costs for Celiacs (CC4C). She is a high school senior, and I was so inspired by her business that I couldn’t pass up the opportunity to dig a little deeper into her experiences through an interview. Here’s what she had to say (with some italicized commentary from myself: 

Tell me more about yourself.

My name is Lexie Van Den Heuvel, and I am a high school senior from Wisconsin. If I could emulate any one person’s accomplishments in my life, it would be Florence Nightingale; she dedicated her entire life to raising the standard of living in hospitals, recording health care statistics during wartime, and walking through barracks of wartime hospitals to check on patients (specifically during the Crimean War). She worked hard and truly cared about the well being of others, and I wish to follow suit (Amazing!). A few of my likes:

– country music
– cheddar cheese (and consequently lactaid)
– field hockey
– making money, but not spending it 🙂
– anything to do with Wisconsin–go pack <3

What inspired you to start CC4C?

In a world surrounded by loving family members, great friends, and intelligent doctors, I felt alone. For four years, I cried myself to sleep and woke up with debilitating pains in my stomach and head. Everyday I was overcome with nausea, dizziness, acid reflux, and muscle fatigue, but my state of constant agony led others to believe I was just a hypochondriac (Too many of us experience this same response from caring doctors and family/friends). I was stuck in what seemed like a perpetual state of isolation and misunderstanding. I wanted help, but no one would listen.

Finally, after four years of misdiagnosis and thousands of dollars in doctors’ bills, I was diagnosed with Celiac Disease: a genetic autoimmune disease that leads to erosion of the small intestine when gluten (a protein found in wheat, barley, and rye) is ingested.

The first time I went shopping after my diagnosis, I realized that gluten-free products were two-three times more expensive than regular items. I thought: “How do low-income families afford the costs of a gluten-free (GF) diet?” After speaking with a Dietitian from Children’s Hospital, I discovered that many families often purchase less expensive, gluten-containing food because they can’t afford GF products; yet, this decision puts their Celiac-affected children at risk for major health concerns: migraines, infertility, cancer, early-onset osteoporosis. It upset me that children my age around the country were suffering from a treatable disease simply because they didn’t have the access to affordable food: a basic human right.

When I called the local Hunger Task Force, they said they did not have a separate food bank for children and adults with allergies/intolerances. When I asked if they had any future plans to help out the Celiac and food-allergy community, they said there were no plans because logistically it was easier–financially and physically–to focus on those without obligatory dietary concerns. I was appalled; food, the one thing that was supposed to be providing young children with nutrition, was killing them from the inside out, and no one had the resources to assist them. Even the national government didn’t help. Although it is a non curable disease, Food Stamp Programs do not give extra money to these families to help offset the costs. (As a social worker and food share volunteer and food justice advocate I am so heartbroken that this is the response Lexie got.- we need to do more, with youth and adults like Lexie!)

I couldn’t sleep; trips to the grocery store made me feel guilty, and reading stories about struggling families further increased my anguish. I was at a crossroad: I could sit around comfortably and occasionally feel guilty about my financial stability in the midst of pain and suffering; or, I could stand up and start something that mattered: I could not undo the intestinal degradation that I went through, but I could make sure it didn’t happen to anyone else. I was concerned that my comfortable inaction would cause long-term health risks for Celiac-affected children who couldn’t afford the gluten-free diet when I was in a position to help. As Founder and CEO, I have dedicated hundreds of hours to establishing and growing Cutting Costs for Celiacs, Inc. over the last four years. Whether educating the newly diagnosed, organizing and running fundraisers, or analyzing beneficiary feedback, I have always focused on one goal: allowing Celiac-affected children in Wisconsin to maintain their highest level of health possible. No Celiac patient should have to eat gluten because they can’t afford it: everyone deserves to be happy and healthy.

Can you explain the components of your program?

Cutting Costs for Celiacs has three unique programs:

1. Our major program is our gift basket program; every month, we send gift baskets to newly diagnosed Celiac patients. Inside of the baskets there are GF products, coupons, lists of GF bakeries, restaurants, and grocery stores, our favorite GF recipes, and recipes for families. We have donated over 1,000 pounds of food so far.
   

   Above is a photo of the products that typically go into our boxes, but they do change every month depending on donations.

2. Our second program is our stipend program; we send $50 in gift cards to low-income families so they can purchase GF products at local grocery stores. We additionally send educational materials for ideas on how to cut costs.
3. Our third program is our coupon e-newsletter, in which we send coupons via email to Celiac patients so they can “cut the costs.” Our goal is to reach as many people as possible; having a genetic autoimmune disorder is confusing and overwhelming and we aim mitigate that confusion and financial burden. Here is the link for our newsletter: http://www.cuttingcostsforceliacs.com/#!coupon-mailing-list/mbfw7

Who is eligible for your programs?

1. Gift Basket Program: Newly diagnosed (within the last 12 months) Celiac patients who are under the age of 18 and living in Wisconsin
2. Stipend: Celiac families (have at least one individual under the age of 18 with Celiac disease) who live at or below the poverty line–see our website for poverty specifications
3. Monthly email coupon/social media presence: Anyone with an email/social media account who wants to sign up/follow us!

How many people has CC4C helped?

Cutting Costs for Celiacs has helped over 35 families in the last four years through our stipend and basket programs, and we reach 300 families with our Coupon of the Month. To increase the number of families we help every year, we just started a program at Children’s Hospital. If you are diagnosed with Celiac Disease at the Children’s Hospital of Wisconsin in Milwaukee, WI and attend the gluten-free educational classes, you automatically get a free basket from Cutting Costs for Celiacs. This means that families who are diagnosed get a week of free, safe, gluten-free foods before they even get home and they don’t have to rush into grocery shopping right away (this is my favorite program because I know how stressful the day of diagnosis is :)).

Who are some of your partners or affiliates?

Milton’s Bakehouse, Udi’s, Kinnikinnick, Bob’s Red Mill, Canyon Bakehouse, Trader Joe’s, Enjoy Life, and Glutino have all been major contributors to our non profit either through coupon or in-kind donations and we are very appreciative of their efforts to help! Additionally, Simply Gluten-Free Magazine is the official magazine of Cutting Costs for Celiacs. This means they send us magazines every other month to put in our baskets and give to our stipend program recipients. The magazine is filled with delicious recipes and ideas for living the gluten-free lifestyle. You can subscribe to them on our website: http://www.cuttingcostsforceliacs.com/#!magazines/e0qwk

What is your best piece of advice for someone who is newly diagnosed and trying to cut costs?

Do not rush straight to the grocery stores. The first grocery store visit can be extremely overwhelming, and a lot of new patients rush to buy a ton of products in the gluten-free aisle. Our recommendation is to ask yourself two questions: what do you need for the week? And can I find naturally gluten-free products instead of overloading on processed foods (which are usually more expensive)? There are a ton of online blogs that discuss gluten-free meal plans/ideas. Here are a few of our favorites:

Meal Ideas (page four): http://www.gikids.org/files/documents/resources/Gluten-FreeDietGuideWeb.pdf7 Day Meal Plan: https://celiac.org/live-gluten-free/7-day-gluten-free-meal-plan/

How have you handled starting a nonprofit at such a young age?

There is a reason we do everything in life: you get a job because you need to make money; you go to school because you need a better education; you practice yoga because you need to relieve stress. But starting a nonprofit was never something I needed to do. No one ever sat me down and said “Lexie, it is your obligation as a 14-year-old to start a nonprofit organization:” It was always something I wanted to do. It’s what motivated me. Founding a nonprofit was an obtainable goal because I was fueled by my own desires to help others so that they didn’t have to endure the same suffering I had once felt. When I have to fill out tedious government paperwork or when I have a lot of work to do outside of my nonprofit, I just think about all the Celiac kids who could be crying themselves to sleep that night due to the side effects of eating gluten because they can’t afford GF products.

Cutting Costs for Celiacs has been difficult, no doubt, but life is difficult. However, doing something you love makes it so much easier. If the endeavor you are pursuing is not worthwhile to you; if it doesn’t fill you with an overwhelming sense of joy, then take a step back and ask yourself: why am I doing this? We can accomplish a lot more (and help a lot more people!) if we enjoy what we are doing.

What resources have helped you develop CC4C?

1. Marquette University (Wisconsin) has a wonderful department called M-LINC that allows nonprofit founders to sit down with Law students and discuss their current legal standings. For new nonprofits, they outline necessary paperwork and laws that your corporation has to follow both at the state and national level. It is amazing what they do for you! Last time I was there, it was me in a room with four lawyers who were all focusing on me; after the session, they sent me a detailed email recapping what we discussed, the federal paperwork I needed to complete, and the answers any questions that they were unable to answer during the session. I highly recommend this program for other nonprofits in Wisconsin: http://law.marquette.edu/mvlc/m-linc
2. I also had two meetings at the Nonprofit Center of Milwaukee: “Starting your first Nonprofit” and “Picking the Right Board of Directors.” They gave me packets of information, which I still use to this day about 501(C)3 status, marketing, and other federal filings. They offer classes every month: http://www.npcmilwaukee.org

What are your plans for the future?

Since starting my own nonprofit, my desire to study business and marketing in college has grown and I hope to pursue these disciplines at either the University of Notre Dame (Mendoza) or Johns Hopkins University. I am leaning towards U of Notre Dame because they have one of the top gluten-free programs in the nation and they also have a gluten-free club :). I would like to start my own “not-only-for-profit” company after college (similar to KIND or TOMS business model) and I want the work that I do to be extremely meaningful.

Isn’t Lexie just fantastic?  I was to thank her for taking the time to speak to me, and for everything she does. It is wonderful to have such dedicated and passionate youth in the gluten free community and I cannot way to see what she develops or grows in the future. Cutting Costs for Celiacs is an AMAZING program making a great impact. If you are interested in supporting this effort, there are multiple Ways to donate. As always, every little bit counts. Curious to find out more about Lexie and CC4C? Check them out at the following  social media handles!