Supporting the Center for Celiac Research through “Making Tracks for Celiacs”

About this time last year, my family and I participated in “Making Tracks for Celiacs” along with extended family and friends, most of whom join us every year for this event which means so much to us. We have been doing this twice a year for 5 years now — forming a team for the Buffalo walk and going just as a family to the Rochester walk.

2013 is the 12th year for “Making Tracks for Celiacs,” which is an annual fundraising event, organized and managed by the Center for Celiac Research at Mass General. These events around the country have raised almost $2,000,000 to date. The money is used to increase awareness and support research (75% of funds) as well as national and local celiac projects (25% of funds).

This year there are events held in these states: AL, MD, MI, MN, NY and VA, and are usually planned by a local gluten-free diet support group such as the one I belong to.  Check out the main website for “Making Tracks for Celiacs” to learn which cities hold events, which locations are walks versus run/walks, and how you can get involved! Some will be happening soon but others aren’t held until Autumn, which leaves you plenty of time to put a team together — or just enter yourself and/or your own family.

We choose to get a local team together because it is a really great way to show support and love to g-free kids, and it’s important for them to see the “regulars” who attend and donate year after year.  It’s cool to show them how the numbers don’t dwindle off, either — last year we collected the most money we ever have, and had more walkers than any other year, including many who join us annually. My girls know they are not forgotten and that they are backed by many friends and loved ones on their gluten-free journey. It’s something they look forward to every year.

Our team last year was called “Team G-Free Kid” and together we raised $545 to donate to the Center for Celiac Research, along with entry fees paid by over 20 team members. Even though that seems like a lot to us, other “go-getters” have already collected thousands of dollars each for their teams! If you’d like to collect donations (it’s not mandatory) you can easily start your own personal donation page or team page through CeliacWalk.org, and email your friends and family about it. Registration is simple as well. Everything you need to know is in the green column on the lefthand side of that site.

For the first few years, Morgan was the star of our team, but now Lindsey shares the spotlight, too, since she’s been gluten-free for over a year now. We also had a newly gluten-free and casein-free friend (below) and his family join our team for the walk last year, plus dozens of other kids in attendance.

At both of the walks we attend, there is always a ton of stuff for kids to do….clowns, balloon artists, face painting, fake tattoos, stickers, bounce houses, games, local mascots in attendance, special kid goodie bags, story time and all kinds of things. Obviously, different locations will have different activities, but from what I hear, most, if not all, are very kid-friendly.

At this year’s walk, the organizers were also selling these awareness bracelets which support the Center for Celiac Research. For more details on these, please read this post.

There are also a good number of local and national gluten-free food vendors at these events as well, giving out free product samples, coupons and learning material… Many thanks to the generous companies who donate goods towards these walks!

And if the other events are anything like the two we attend, rest assured that you will bring home a crazy amount of gluten-free samples, bars and full-sized product packages. And, if your friends and family are anything like ours, much of their food (from their own goodie bags) will be passed back for your family to enjoy.

All in all, we get a lot out of these walks. When you are among so many other gluten-free folks, there is a huge sense of camaraderie, and you know you are supporting a great cause: celiac disease (and non-celiac gluten sensitivity) research and awareness. Our daughters feel special — especially at the walk where we form a team, and they are always excited about all of the samples they get to try and take home, knowing everything is gluten-free and there’s no need (for once) to question anything. The walk itself is good, healthy family time that you can really soak in and enjoy, knowing that you’re making a difference and that your kids are swelling with pride.

If you are nowhere near any of these walks, you still have three options…
#1: Get some people together and start one (see “How to start your own walk” on CeliacWalk.org) in a new location; #2: Donate online towards the cause; or #3: Try something different: Join Team Gluten Free for any race around the country. How does it work? Read more about one family’s experience here.

Whatever you do, don’t just sit back and let everyone else take action…

As we like to say, “Celiac disease isn’t contagious, but awareness is.
Please help spread it!”

5 tips to empower g-free kids

As parents, the best thing we can equip our g-free kids with is a positive attitude when it  comes to being gluten-free — right from the start.  As soon as that optimistic attitude is in place, the next thing to help them cultivate is a budding sense of independence. As our children grow, we can help empower them to start taking the lead. Here are 5 tips that have helped my twin daughters (one with celiac and one with non-celiac gluten sensitivity) start to be g-free advocates:

Help them champion their own cause:
Show them some ways in which they can help spread the word and raise money for celiac disease awareness. Help them start a team for an upcoming celiac walk and let them help keep track of donations flowing in and asking friends and family to physically be there to walk together as a team. We have been doing two Celiac walks (“Making Tracks for Celiacs”) a year for the past 4 years — one with friends and extended family, and another one further away from home by ourselves. We take group photos, wear team tags and hang out before and after the walk. We usually win a gift basket for the amount of money we raised and the girls help pick it out. Going home feeling supported by loved ones, with a prize and tons of free gluten-free samples in tow — plus a sense of pride in knowing we helped raise money for a good cause — is always a great boost for self-esteem.

If you don’t have one of these annual walks in your area, learn how you can raise money through Team Gluten Free or NFCA instead.

Nurture their creativity:
Make your g-free kid feel like a champ by helping them design a “Super Celiac” or “Gluten Free Girl” costume. If your child is still young enough to enjoy dressing up and playing pretend, letting him or her play make-believe Superheroes with a cape and power bracelets (see photo) is a fun way to “zap gluten” or whatever they want to play.

If your child is old enough, let them have their own cooking show. Have them don an apron and chef’s hat and talk through a cooking demonstration while you videotape them. This will be good public speaking practice, and it will help them organize their thoughts, follow recipes, read aloud and use good eye contact. Have them practice what they plan to say and do on the video until they are comfortable enough for you to start taping. Post it on YouTube to get them excited that they made a “real” video, which the whole world can watch and learn from.

Do your kids enjoy music more than cooking? Together, come up with some new lyrics to go with a familiar tune — all about being gluten-free. Put it to music, videotape it and send it to friends and family.

Or let them start a pretend bakery where everything is gluten-free. Help them set up a place to play with pretend food, aprons, toy cash register, fake money, paper plates, etc.  Let them make their own signs, menu and decorations. Be their best customer and encourage the rest of the family to stop by with a smile and place an order.

Being gluten-free becomes natural and fun when you bring all of these types of creative play into your g-free kids’ lives.

Teach them to read labels:
For very young kids who don’t know how to read, send along a list of offending ingredients for caregivers, along with a list of naturally GF items such as fruit and raisins. Help little ones learn how to spot the words “gluten free”, the certified gluten-free logo or other prominent labels. When looking at packages, the terms “multigrain” and “whole grains” can often be confusing for little kids (and even for adults!) so be sure to explain to them that just reading those words on a package doesn’t mean it is automatically ruled out. Corn and rice can still be considered multigrain or whole grain, too. Teach them that oats need to be certified gluten-free to be considered safe, and other similar tips.

Start label-reading lessons small, by going to Grandma’s house and showing them offending ingredients on labels. Then go home and have them read labels on their gluten-free products so they can see what is okay. If your child is old enough and has a long attention span, spend some time together in a grocery store (at a slow time of the week) and go through it aisle by aisle, explaining which kinds of food are gluten-free or not. Show them how many yogurts and ice creams are GF except those with cookies, brownies, sugar cone pieces, etc. Show them all the naturally gluten-free foods and the special area where the gluten-free products are. I do this with my daughters every now and then to test them on what they know, and they, in turn, always love to demonstrate their growing knowledge.  If this sounds too overwhelming for a younger child, then just do it in small doses on a regular basis as you do your weekly shopping together.

Let them speak up for themselves:
Kids of all ages can learn to speak up for themselves to varying degrees. Young kids can learn how to ask, “Is this gluten-free?” or “Is this safe for me to eat?”  Let your child order for themselves in a restaurant and have them inform the waitstaff that their food needs to be gluten-free. Even if you plan on discussing details with the waitress, manager or chef yourself (which I would advise in order to avoid cross contamination) it is important for your child to get in the habit of always making sure people know that he or she needs to eat g-free.

If your child is old enough, test them to see if they can correctly name the gluten-free options on menus at restaurants by themselves. Teach them why they can’t eat certain things like french fries, which are deep fried in shared fryers with gluten-containing foods like breaded chicken fingers. Let them ask if there is a dedicated fryer or not. The older a child gets the more they need to have these habits set in place. The more they practice, the more comfortable they will get with the necessary dialogue. Your child will be filled with pride as he learns these life-long social lessons.

Let it become their “normal”:
Find other gluten-free families that live near you. Get together. Let the kids get to know each other and play together on a regular basis, which might also mean snacking together — gluten-free. Get involved in a kids’ support group and the activities that go along with it. If you can’t find one, be your kid’s hero by starting one and making it happen.

If your child is old enough, let him attend a gluten-free summer camp. There are nearly 20 options in the U.S. alone!  How cool would it be for a g-free kid to be able to do all the regular camp activities with other children on the same diet, without anyone needing to ask if the food is safe or not?

Lastly, fill his or her bookcase with children’s books about being gluten-free. If your child loves dinosaurs or princesses, count how many books he or she has about them. On the other hand, how many books does your child have about being gluten-free — something your child is going to be for life? There are a bunch of great books out there now about celiac disease and being gluten-free. You can never have too many!  As they read the books, they will take pride in knowing that they are “just like” the main characters, which will help them feel understood and cherished. And consider all the people your child can share their books with — teachers, classmates, friends, relatives, etc.  What better way to help spread awareness than lending books? For kids, it doesn’t get any easier…

These empowering tips will take our children far by teaching them knowledge and positive social skills that will benefit them for a lifetime. The wonderful thing is that awareness of celiac disease and gluten intolerance is growing rapidly, which in itself is pretty empowering for all of us!

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This post was originally part of NFCA’s 2012 KISS campaign for Celiac Awareness Month.

Supporting the Center for Celiac Research through “Making Tracks for Celiacs”

This past weekend my family and I participated in “Making Tracks for Celiacs” along with extended family and friends, most of whom join us every year for this event which means so much to us. We have been doing this twice a year for almost 5 years now — forming a team for the Buffalo walk and going just as a family to the Rochester walk.

This is the 11th year for “Making Tracks for Celiacs,” which is an annual fundraising event, organized and managed by the Center for Celiac Research at the University of Maryland. These events around the country have raised almost $2,000,000 to date. The money is used to increase awareness and support research (75% of funds) as well as national and local celiac projects (25% of funds).

Currently there are annual events held in these states: AL, FL, KY, MD, MI, MO, MN, NY, OH and VA, and are usually planned by a local gluten-free diet support group such as the one I belong to.  Check out the main website for “Making Tracks for Celiacs” to learn which cities hold events, which locations are walks versus run/walks, and how you can get involved! Some will be happening soon but others aren’t held until Autumn, which leaves you plenty of time to put a team together — or just enter yourself and/or your own family.

We choose to get a local team together because it is a really great way to show support and love to g-free kids, and it’s important for them to see the “regulars” who attend and donate year after year.  It’s cool to show them how the numbers don’t dwindle off, either — this year we collected the most money we ever have, and had more walkers than any other year, including many who join us annually. My girls know they are not forgotten and that they are backed by many friends and loved ones on their gluten-free journey. It’s something they look forward to every year.

Our team this year was called “Team G-Free Kid” and together we raised $545 to donate to the Center for Celiac Research, along with entry fees paid by over 20 team members. Even though that seems like a lot to us, other “go-getters” have already collected thousands of dollars each for their teams! If you’d like to collect donations (it’s not mandatory) you can easily start your own personal donation page or team page through CeliacWalk.org, and email your friends and family about it. Registration is simple as well. Everything you need to know is in the green column on the lefthand side of that site.

For the first few years, Morgan was the star of our team, but now Lindsey shares the spotlight, too, since she’s been gluten-free for over a year now. We also had a newly gluten-free and casein-free friend (below) and his family join our team for the walk this year, plus dozens of other kids in attendance.

At both of the walks we attend, there is always a ton of stuff for kids to do….clowns, balloon artists, face painting, fake tattoos, stickers, bounce houses, games, local mascots in attendance, special kid goodie bags, story time and all kinds of things. Obviously, different locations will have different activities, but from what I hear, most, if not all, are very kid-friendly.

At this year’s walk, the organizers were also selling these awareness bracelets which support the Center for Celiac Research. For more details on these, please read this post.

There are also a good number of local and national gluten-free food vendors at these events as well, giving out free product samples, coupons and learning material… Many thanks to the generous companies who donate goods towards these walks!

And if the other events are anything like the two we attend, rest assured that you will bring home a crazy amount of gluten-free samples, bars and full-sized product packages. And, if your friends and family are anything like ours, much of their food (from their own goodie bags) will be passed back for your family to enjoy.

All in all, we get a lot out of these walks. When you are among so many other gluten-free folks, there is a huge sense of camaraderie, and you know you are supporting a great cause: celiac disease (and non-celiac gluten sensitivity) research and awareness. Our daughters feel special — especially at the walk where we form a team, and they are always excited about all of the samples they get to try and take home, knowing everything is gluten-free and there’s no need (for once) to question anything. The walk itself is good, healthy family time that you can really soak in and enjoy, knowing that you’re making a difference and that your kids are swelling with pride.

If you are nowhere near any of these walks, you still have three options…
#1: Get some people together and start one (see “How to start your own walk” on CeliacWalk.org) in a new location; #2: Donate online towards the cause; or #3: Try something different: Join Team Gluten Free for any race around the country. How does it work? Read more about one family’s experience here.

Whatever you do, don’t just sit back and let everyone else take action…

As we like to say, “Celiac disease isn’t contagious, but awareness is.
Please help spread it!”

Proud to be gluten-free with these cool awareness bracelets

How could a g-free kid not feel proud, when sporting this unique bracelet?!

I attended my local Celiac support group’s 25th anniversary party this past Fall, where I finally got to meet Dr. Fasano and Pam King from the The Center for Celiac Research & Treatment at Mass General.  I am honored to have Dr. Fasano’s endorsement of my book and that numerous copies of it are available for patients to peruse at their Center.  At this “Gluten Freedom Day” event, I was thrilled to hear Dr. Fasano speak so much on the topic of gluten sensitivity as well as Celiac, as both conditions touch my family.

After his presentation, Pam was selling these TriBandz bracelets in the vendor area, along with Dr. Fasano’s books.  I had seen them before online but hadn’t realized how cool they are in reality.  I knew I had to get them for my 8 year old twin daughters, one of which has Celiac and the other gluten sensitivity. I knew they would love to wear something special that other kids don’t have (especially after every kid on the face of the planet was wearing those SillyBandz for so long!)  🙂

Each bracelet is only $3 which includes three 3D disks that pop in and out. You can also buy up to 3 different sets of five variety packets (of 5 different disks) to mix and match for only an additional $2 a set. The bands come in 3 sizes and we bought the smallest, which
wasn’t too loose nor too tight. My daughters have had fun borrowing each others’ disks and they change up their bracelets a lot. Kids can even wear these for sports as there are no sharp edges, plus they can get wet. The rubber is soft, sturdy and very durable.

 

We are proud to be able to support the research Dr. Fasano and his team are doing at the Celiac Center — from creating a “Making Tracks for Celiacs” team every year where we collect donations for the Center, to personal donations and spreading the word about what they do. When you purchase these TriBandz bracelets, you are even supporting important research taking place there. And of course, as kids wear these bracelets and talk about them with friends and family, it is also helping to raise Celiac disease (and gluten sensitivity!) awareness in many little corners of the world.

Think of all the g-free kids out there who would love to sport a cool bracelet like this…
Give them in Easter baskets, as stocking stuffers, part of a birthday gift, or “just because.” If you are part of a support group, please ask those in charge to consider buying these in bulk to sell at your events and meetings, or to give them as gifts to newly diagnosed gluten-free children.

As we like to say:
“Celiac disease isn’t contagious…but awareness is. Please help spread it!”

To find out more, and to order, visit www.celiacwalk.org and then click on “Celiac Awareness Items” on the lefthand side.

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