In many ways, Alex is a typical 12 year old girl. A 7th grader from a Chicago Suburb, Alex is an avid long distance runner who takes ballet class, plays defense on her soccer team and goes for long walks with her dog, Hermosa. Last year, she was diagnosed with celiac disease. Alex, whose previous favorite food in the world was French bread, must now avoid even microscopic traces of gluten for the rest of her life or risk serious long term health complications.
Alex just joined Team Gluten-free and has decided to combine her love of running with a strong desire to help with efforts to find a cure for celiac disease. She therefore established a 5K race — Alex’s 5K RAGE (Race for Answers to Gluten Enteropathy) held on Sunday, June 8, 2014.
Alex has a few tips for people on how to create their own 5k walk or run. Here is what she has to say:
I was diagnosed with celiac disease last summer. Every year, I am responsible for doing a community service project. Ever since my diagnosis last summer, I decided to focus on my love for running and turn that into an opportunity to raise funds and awareness for celiac disease.
My family and I talked about different projects and thought that a 5K would be a cool idea. We joined Team Gluten-Free because it is an easy way to get funds to the Celiac Disease Foundation and it allows our donors to still get tax receipts for their donations.
10 Tips to Hosting a Memorable Charity Golf Outing
A charity golf tournament can be a great way to raise a significant amount of money for a good cause. Overall, the key to success is putting together a great team, and working together to make the tournament a fun experience.
1.) Figure Out Your Budget
The business of golf outings might seem overwhelming at first because of the initial cost. Many courses require a hefty deposit for reserving multiple tee times. Revenue is the key to raising money for your cause. Keeping track of all money in and out and staying conservative when it comes to expenses can help ensure a successful event.
2.) Lock Down Some Sponsors
For charity events, the biggest revenue stream is through sponsorships. Other sources of revenue will be registration fees, but only a small part of it.
It is typical for a company to sponsor an entire tournament, with their business promoted near the clubhouse or advertised in the correspondence associated with the event. Donations or gifts from businesses are also common. When looking for sponsorships, target companies that have a connection or correlation with celiac disease.
3.) Pick the Right Golf Course
Would your group be categorized as casual or experienced golfers? You can research a course to see the difficulty level and match your anticipated participants with the appropriate venue. If this is your first year planning the event, start planning about 9-12 months in advance to ensure you get the right course.
4.) Determine Roles and Responsibilities
At minimum, you should have four friends or colleagues assisting with the outing. It is also important to have volunteers who are familiar with golf. Because most participants show up around the same time, it is helpful to have volunteers signing people in and directing traffic in the beginning of the event.
5.) Advertise the Event on Various Platforms
You can create web pages where people can register for your event. It is important to track all donations and registrations. Some examples of online fundraising platforms include justgiving.com or crowdrise.com. Printed and digital marketing materials reach different target populations (e.g. pamphlets, emails, postcards). You can use social media and your team’s relationships to support the event.
6.) Give Thought to Tee Times and Scoring Formats
If your outing is more than six groups, use shotgun tee times. This means that your party will start simultaneously on different parts of the course. This ensures the tournament ends around the same time, without it going all day.
The most common golf outing scoring format is scramble, which entails everyone in the group hitting from the same spot, proceeding to pick the best shot and going from there.
7.) Provide Food and Drink
The golf club will usually provide food and drink. Talk to a course representative about bringing in outside food or beverage sponsors to the event.
8.) Day of the Event
Give yourself enough time to set up before the event begins. After your participants have all checked in, gather them for opening remarks. Throughout the day, focus on making introductions and encourage networking. At the end of the event, make closing remarks to thank everyone who has participated and to recognize sponsors, volunteers, and teams.
9.) Create a Fun Environment
Here’s a short list of easy offerings: Taking a group’s picture before tee-off, long-drive, closest to the pin, longest putt contests, and team awards for first, second, third place.
Try to include raffles or silent auctions for items, such as golf clubs, memorabilia, or trips. Most of these gifts should be covered by donation or sponsorship. If this cannot be procured, factor in the cost of these to the entrance fee.
10.) Don't Let People Go Home Empty Handed
It is important to provide your participants with a takeaway gift. If your budget allows, you can look into a special trophy, tickets to a game, gift certificates to a restaurant, or to the golf club’s store.
Celiac Disease Foundation’s Annual New York Golf Outing
Celiac Disease Foundation board members hosted the Celiac Disease Foundation’s New York Golf Outing for the past 6 years with great success. The 6th Annual New York Golf Outing was a sellout crowd of 140 golfers. It was a special day filled with fun in support of ending the suffering caused by celiac disease. They are looking forward to making next year’s event even bigger and better!
Adrienne Bender and her family have raised thousands of dollars for Team Gluten-Free in the past few years. One of the events that she hosted in 2015 was a benefit dinner at Eno Terra Restaurant in Kingston, NJ. The restaurant donated a portion of sales from the night and Adrienne held a raffle during the event. You can read Adrienne’s story below:
After a difficult pregnancy, here he was, our four pound six ounce first born. Despite being five weeks early and small, he was…perfect. By his third year, Alex was still small and wasn’t putting on weight, so our pediatrician, Dr. William Giasi, suggested a blood test for celiac disease and an appointment with a gastroenterologist through the Children’s Hospital of Philadelphia. How could a child who always ate pasta and pizza have celiac disease and us, as parents, be so oblivious to it?
After a positive blood test and an endoscopy, the results were in and, in fact, Alex had celiac disease. We were upset but relieved that after minimal effort, we had an answer for Alex’s growth issues. That night, after it all sunk in, I cried for him.
I cried for the struggles he would face, the children’s birthday parties where he would need to bring his own food, the need to always worry if what he would eat would hurt him, and the feelings he may have of being different.
After a few weeks on a gluten free diet, I saw Alex have more energy and a better attitude. At only three years old, maybe he never knew what feeling good meant and could never express any pain he had.
This made me hopeful that with more time on a gluten free diet, Alex would be 100% healthy. At nearly six years old, I am happy to report that Alex continues to excel and is happy to teach his friends about eating gluten free.
After Alex’s diagnosis, I knew I wanted to partner with an organization to help raise awareness and funds for celiac disease. In the years since, we have raised thousands of dollars and educated many people.
The experience of health in my family is somewhat of a dichotomous one. I was, ostensibly, born healthy, to relatively healthy parents. My brother, two years my junior, was born with eczema and acne, was colicky, and had allergies and asthma that sent him to the hospital many times in his youth. To everyone’s great delight, he always emerged unscathed and life moved forward.
I suppose the first sign of trouble was around puberty for me. I was a very active young professional horseback rider, and I had a career in it until my allergies suddenly presented with the same severity my brother’s had at birth. My asthma was crippling, and I experienced profound mood changes.
The contrast was stark: my brother, once unhealthy, was strong, while I was in for rounds of tests after years of being perfectly and robustly healthy. I finished high school well, went to Duke University, and there began to have problems again.
I was experiencing seemingly random weight gain, brain fog, reoccurrence of asthma and allergic symptoms, and was constantly tired. At the inception of my celiac symptoms, I thought I was experiencing relatively normal responses to college: drinking beer for the first time en masse, eating pizza at 2:00am, and in general treating my body as disposable.
My future husband, Thomas, had been watching my body fall apart for the few months he had known me. Thomas pointed out that I had used an entire 160-puff inhaler from my pulmonologist in the course of a few weeks, and that I’d been to the hospital to no avail at least twice. I was at the end of my rope; he was at his wit’s end, too. I started hunting around the Internet for solutions, considered autoimmune issues, and finally found the Celiac Disease Foundation website.
While Thomas was in class at law school, I checked off a list of symptoms, read stories of confusion and misdiagnoses, and did my own version of the Celiac Disease Foundation’s 7-Day Meal plan. Suddenly, with almost criminal clarity, I knew the answer.
Thomas and I scrubbed gluten from our diets, though I knew it would make celiac disease much harder to diagnose. I was feeling so much better: I was losing all of the inflammation weight, my asthma was disappearing, and my mood stabilized. My anxiety attacks evaporated, and I felt like myself for the first time in three years. My husband held me while I cried from relief. In the course of a month, I felt human again.
When Thomas and I moved up north to New York, I went back to an old nutritionist, and she ordered a battery of blood tests. I suggested that I had been on the Celiac Disease Foundation website, and that a lot of my issues were on the handy checklist used for a preliminary diagnosis to ask your doctor about. I told her I felt much better now that I had cut gluten out of my life. I remember very clearly that she was skeptical since my symptoms hadn’t presented early in my life, but ordered the tests anyway.
She told me that the tests would reveal nothing except genetics, but I wanted proof. My family, despite being health-conscious, was resistant to the idea of celiac disease without hard evidence. The tests showed, ultimately, that I was a heterozygote match for the gene, and my gastroenterologist confirmed diagnosis.
With my Celiac Disease Foundation Symptoms Checklist in hand, I went from nutritionist to gastroenterologist, had blood draws, endoscopies, consultations with PCPs and pulmonologists.
The Celiac Disease Foundation has been a guiding light in my experience with celiac disease, as I know they have been for many other otherwise hopeless patients. In a time in my life that I term as the “pea soup fog period,” the information I found from the Foundation cut through. What could have happened had I not found this organization and their bountiful resources about this disease? For one, I know I would have been hospitalized several more times before I found out the truth. I certainly would not have been as healthy as I am now—and I would not have joined Team Gluten-Free’s efforts to spread the health around.
About a year after my diagnosis, I found myself having profound cravings for beer. My husband, bless his heart, is a strapping, beer-drinking German, and I watched him enjoy Hefeweizens, Oktoberfests, lagers, pumpkin ales, Schwarzbeir; I wanted to cry. So, I resolved to start brewing on my own. After about six months, I thought that I could step it up and actually go into business. Church Owl Beer was born shortly thereafter, and we are now in it for the long haul.
Of course, I had to include the Celiac Disease Foundation in my journey: they had so revolutionized my life that I felt I had to give back, at least in some small way. When I found out about Team Gluten-Free, I went to my friends and Agent Provocateur, and swiftly put together an event that would benefit the Foundation.
The focus was on women with the disease and the symptoms they experience, such as infertility, weight gain, and hormonal imbalances, just to name a few. Thus, the Beers and Blazers event was formed. Partygoers would try on fabulous lingerie-inspired outerwear, sample Church Owl Beer’s autumn brew, and 10% of the proceeds would go to the Foundation.
My experience with Team Gluten-Free was nothing short of phenomenal. Several members of the team reached out and sent wonderful informational placards, banners, and take-home sheets for goodie bags (we supplied shot glasses with Church Owl Beer’s logo, and Agent Provocateur gave their signature keychain). I am so happy to say that the event was a total success, bringing together sufferers and supporters alike for a wonderful cause.
I have come a very long way since I was diagnosed, and even further from the months leading up to diagnosis. Without the support of Celiac Disease Foundation, I would not, really, be who I am now. Further, I would not have found my calling in the beer industry, and I would not have been able to give back to them in turn.