Tag Archives: advocacy

Teach your kids not to be @$$holes about food allergies.


You need to read this:

Now.

Dig it?

On the “Super-Cool Food Allergy News” front, FARE has said they will not accept donations from Mylan until this Epi-Pen price-gouging shenanigans is resolved.  That makes me feel a lot better about asking for your donations for the upcoming Food Allergy walk in Pittsburgh.  It’s a little less messy.

As the linked article proves, we still need awareness.  We still need education.  We still need advocacy.  We still need research.  We still need a cure.  That is what all of your donations go to.

Don’t be ridiculous.


Seriously.

Epi-Pen Shenanigans.


I was going to write a blog about;

But, if you’re interested (even mildly), you have already read those things and made up your own mind.

My initial reaction was to pull out of the FARE walk for Food Allergy due to Mylan’s sponsorship.  But, that won’t do anyone any good.  We still need research.  We still need advocacy.  We still need awareness.  We still need a cure.

I have to trust that in the midst of public outcry, Bresch will be held to task.  I can hope that the rest of the good people at Mylan don’t suffer.  I currently refuse to revel in the failures of others, even if it is at their own hand.

I again would like to ask for donations to this year’s food allergy walk, and I will once again participate in the Teal Pumpkin Project this Halloween.

People like me need your help.

Epi-Pens in a Skull Glass

Don’t let Mylan’s issues prevent you from helping food allergy research, education, and advocacy.

_OOD ALLERGIES - Let's kick the F out of food allergies

Kyle Dine and Friends | DVD Review


I posted a review of Kyle Dine’s DVD on Amazon, and wanted to share it here…

Kyle Dine is an incredibly talented and extremely creative children’s entertainer.  He also wields the utmost authority on living life while coping with food allergies as he has multiple food allergies himself and is a successful world-travelled musical educator.

These expertly crafted videos are full of incredibly fun and catchy age-appropriate songs and lessons about having food allergies.  How to avoid your trigger foods, hand washing, always carrying your auto-injector, and how to quickly reach out for help if necessary are just some of the topics not only touched upon but driven home by Kyle and his puppet friends.  

As an adult with a severe food allergy I am so glad that this type of resource is available for the ever-growing “club” of the food allergic.  As a parent of a child with food allergies, this is an invaluable tool to help teach a toddler turning into a pre-schooler about the importance of not eating food unless it’s OK’d by mommy or daddy, and for her to let us know immediately if she is having a reaction.  Luckily she loves to wash her hands, so we’ve got that covered.  These lessons are delivered in the fine tradition of children’s programming like Sesame Street or Mr. Rogers, and they work.  Both of my kids were moving to the music upon our first viewing!

I not only recommend this for food allergy families, but I would say that extended family who may not understand food allergies, your child’s friends and their parents, and organizations like schools, churches, camps, & clubs could all benefit from the knowledge and entertainment provided by this set of DVD’s.  This programming ought to play on constant rotation in your family’s pediatric allergist’s office waiting room.

This can and will serve as an incredibly fun way to open the door to creating a fun, safe, and confident approach to living with food allergies.

Kyle Dine & Friends: Allergy Awareness with Songs, Puppets, and Games

Kyle Dine & Friends

 

Separate is indeed not equal! Food allergies & bullying. |-o-|


I haven’t blogged about food allergies lately, so it’s time.  Luckily the other day, a great post popped up in Google Reader, with a striking headline:  We Have Come Too Far To Forget, Separate Is Not Equal

I happen to consider the author Thanita a Twitter friend, and a proud member of the #FoodAllergyMomArmy.  It’s got a great message.  Obviously the first thing it brings to mind is racism, but it can now be applied to any group facing discrimination.

As I’ve said before… I’d like to see any changes brought forth from a consumer side of view, not a legislative one.  When we’re dealing with schools, parents really need to get involved and not just the parents of the food-allergic children.  Legislation in this area may be the best answer as far as schools are concerned.  After all, it’s a gub’ment institution, right?  (Things like the School Access to Emergency Epinephrine Act are extremely important to protect food-allergic kids, as well as any that may have reactions to thinks like latex or bee stings.  Pennsylvania now seems like it’s on top of things.)

All in all, some earnest thinking about the whole thing will bring forth a hopefully easy decision:

When other parents tell the family of the anaphylactic child to just “home-school, it’s safer, we’re looking out for your best interest”, it’s a joke. Separate Is Not Equal.

When a child is forced to peer over a sea of smiling, laughing, socializing children, all the while sitting on a separate table alone, “for his/her safety”, it’s Separate and Not Equal.

We have to ask ourselves, how far have WE come since the 1950’s? Would we be doing this to a child with autism? To a child in a wheelchair? To a child with dark skin? If the answer is never, then do not do it to a child with an anaphylactic disability.

Think about that.  There’s a lot of buzz about bullying lately, & it certainly falls on food-allergic kids.  For an example, read this awesome article by another #FoodAllergyMomArmy member and cool Twitter friend Libby about bullying: Bullies, Food Allergies and The Force

This is heavy:

By the way, just one mistake can be fatal. Have I mentioned the shocking levels of stress in parents of children with food allergies?

So this morning I dressed my son in one of his Star Wars t-shirts and talked to him about Katie and how it’s ok to be different and not ok to tease or bully someone else. I packed an allergen free lunch, gave him hugs and kisses, told him I loved him and sent him off to school with a prayer that he would come home safely, something I never take for granted.

To the kids with food allergies and their parents, may the force be with you. You’re going to need it.

One mistake can be fatal.  Let’s all help make sure it doesn’t come to that.  These food allergy moms & dads (& brothers & sisters, etc.) are badass, I tell you.  It takes courage to muster up the confidence to put together a safe plan for your kid(s), and to be strong for them when you probably just want to break down & cry about it yourself sometimes.

Food Allergy & Anaphylaxis Network

Prevent Bullying

It’s up to all of you reading to inform schools, restaurants, and everyone that you’re not going to exclude yourself or your kids from society or live in fear from your food allergy.  It’s up to you to be ever-vigilant and cautious, but it’s all so up to you to not back down or let your kids be ostracized for being different.

Now, where can I get an Epi-pen case that looks like a lightsaber?

Lightsaber

Thanks to everyone who donated for the Food Allergy Walk!


Thanks to everyone who donated to me for the Food Allergy Walk on Sunday. The Food Allergy & Anaphylaxis Network appreciates your donation, as do I!  I have smashed my original $300 goal, and now exceeded my current $500 goal.  I couldn’t have done it without the awesome support from friends & family!

If you were thinking of donating, but hadn’t yet… I’d like to still smash that goal, or you can donate to the lovely Bethany and help her reach her goal!

Message from FAI and Research America – Food allergy action required!


From: Food Allergy Initiative <info@faiusa.org>
To: Me <me@my.email.address>
Sent: Tuesday, July 19, 2011 12:30 PM
Subject: Message from FAI & Research America

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Finding a cure for life-threatening food allergies. July 19, 2011
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Write Your Congressman Today!
girl with flag
Fight for the Future of Medical Research!
Dear Friend,FAI has joined forces with Research!America, the nation’s largest nonprofit advocacy alliance committed to making health research a higher national priority. We’re fighting for strong, continuing support for life-saving research at the NIH.
Please join us today by writing your elected officials. You’ll find two letters on our site. The first allows you to voice your support for food allergy research, and the second, provided by Research America, allows you to voice your opposition to budget cuts at NIH.
A strong government-private partnership is the key to finding a cure for food allergies. We’ve worked too hard and come too far to fail now. As the world’s largest source of private funding for food allergy research, FAI urges you to write your elected officials today. Millons of Americans–including 12 million food allergy sufferers–are counting on us.
Sincerely,
Mary Jane Marchisotto
Executive Director, FAI
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Our Mission

FAI supports research to find a cure for life-threatening food allergies; clinical activities to improve diagnosis and treatment; public policy to increase federal funding for research and create safer environments for those afflicted; and educational programs to make the hospitality industry, schools, day care centers, and camps safer.

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Food Allergy Initiative 515 Madison Avenue, Suite 1912 | New York, NY 10022-5403
Phone: 855-FAI-9604 | Fax: 917-338-5130 | info
Privacy Policy | Email Preferences
Copyright © 2011 Food Allergy Initiative. All Rights Reserved.

AllergyEats | Defining allergy-friendly restaurant survey results


So, a while ago I posted asking for you to help out Paul from Allergy Eats with defining “allergy-friendly” as it pertains to a restaurant.  I also took the time to post my own thoughts before I sent them on to be tabulated.

Well, now Paul has posted his summary & survey results to the still mysterious government body.  I enjoyed reading the results, so I thought I’d share:

AllergyEats | Blog Logo

AllergyEats Blog

The AllergyEats Blog | How do we define an allergy-friendly restaurant? A look at the survey results

It’s great to see the results, and I can’t wait to see where & how they’re put to use.  It’s also great that all of our comments were passed along with the report, so rest assured that your voice has been heard thanks to Paul.  Hopefully it lays groundwork for more gub’ment organizations to follow by example!  (Although, we need to push from a consumer level too.)

My take on the results… it looks like we’re all looking for everyone in the restaurant from kitchen to wait staff to managers to be trained in food allergies and cross-contamination and possibly even certified… which seems like a no-brainer.  Even if that’s all we get, it’s a great start.

Employee answering phone needs to be knowledgeable: 1

Apparently, I’m the only one who wants the person answering the phone to know what they’re talking about.  Ha ha.  I can’t tell you how many times I’ve had to define shellfish on the phone, or ask if they have any only to get there after being told no… and they totally do.  Perhaps it’s shame on me for not asking to talk to a manager…  but the person answering the phone ought to be knowledgeable enough to hand-off such questions, so I stand by my statement.

Cross contamination: (42 responses)

Understands and avoids cross-contamination:  21

Separate and cleaned prep areas and cookware:  20

Should wash hands:  1

Who said they should wash their hands?  Seriously?  I hope they’re doing that anyway… and that they don’t really need those signs in the restroom as a reminder.

Treats ALL allergies the same, not just the Big 8: 1

Apparently I’m the lone theorist there.  Really?  Well, I’m in the Top 8 category, so I guess… yo hell with the rest of you!  Ha ha.

No nuts strewn about the restaurant: 1

This one agitates me.  If it’s part of the restaurant’s shtick/ambiance/personality… then just give it up.  I like being able to walk into Five Guys and grab a tray of peanuts.  I don’t expect (or want) to dine at Long John Silvers or Red Lobster any time soon.

Specific allergen menus available in-house (not just online): 13

Allergen symbol list on menus: 12

Online food allergy menu: 4

All excellent points.  I’ve blogged about the need for menu symbols before.  Let’s get this done, people!

Ability to print out all ingredients for customer / show labels to customer if necessary: 11

Great idea.  A representative from Bob Evans once emailed me a chart detailing where everything was cooked in the kitchen & what surfaces would be safe with my shellfish allergy while they has a seasonal Shrimp stir-fry dish.  How cool is that?

At any rate, read the Blog at AllergyEats, and leave some feedback whether you participated in the original survey or not… it’s still valuable.  I’d also appreciate any comments here.  I’m sure the peanut thing will get some people riled up.  Ha ha.

 

Get a proclamation from your state governor that says “diarrhea”!


Food Allergy Awareness Week

FAAW

So, Food Allergy Awareness Week 2011 is still a little far off, but at the same time it’s quickly approaching.

Personally, I’m all about pushing it from a consumer-level rather than having some government mandates handed down to reluctant (and perhaps allergen-ignorant) business owners.

But, at the same time, I see the monumental importance of government recognition.  It spreads awareness and gives hope to those of us trying to express the validity and seriousness of food allergies and anaphylaxis.

So, I urge you to do your part, and write to the governor of your state asking for them to declare recognition of Food Allergy Awareness Week.  From the FAAN website:

Take ActionFood Allergy Awareness Week: May 8-14, 2011

Ask your Governor to Issue a Food Allergy Awareness Week Proclamation

Issuing a Food Allergy Awareness Week (FAAW) proclamation is a great way to help raise awareness in your State!

Ask your Governor to declare May 8-14, 2011 Food Allergy Awareness Week!

In 2010, FAAW was recognized in a RECORD 37 STATES! Let’s break this record in 2011!

As of Feb 8, 2011, only one proclamation has been issued (Minnesota). Only 49 more states to go!

So, what are you waiting for?  It only takes a few minutes, and you may even get a nifty official-looking document from your governor with a state seal that has the word “diarrhea” on it.  I mean, how funny is that?


Defining Allergy-Friendly


AllergyEats.com

AllergyEats.com

So, quite a task has been put to the food allergy community by Allergy Eats:  Define what it means to for a restaurant to be “allergy-friendly”.

You may have seen it in a recent re-posting by me, or on your own.  I urge you to form your own response and send it to contact@allergyeats.com.  I figured that I’d use this blog to sort out my thoughts before I sent them on to Paul at Allergy Eats.  I don’t exactly how I’ve morphed in to a food allergy advocate of sorts, but I feel that it’s important to help out any way that I can, and encourage others to keep up work that moves us all in the right direction.  There are already some great comments on the blog, and I’m sure he’s got an inbox full of suggestions already… but it’s important to keep them coming so this can be looked at from multiple angles.

AllergyEats T-shirtI like bulleted lists for some reason, so that’s how I’ll try to organize my thoughts:

  • The restaurant has to have a policy that reaches to ALL levels. Too many times restaurants claim to have god allergy practices, but it doesn’t trickle down to the wait staff, the cooks, or anyone past management.  Having a policy is great, but it needs to be understood and respected through all levels.  I feel comfort in a place when the waitress has the manager or even the chef come out to discuss allergy & cross-contamination issues with me.  Training, some sort of certification, and re-training annually or semi-annually would be excellent.
  • Changing current thinking. This is a good one…  Today at Boston Market, I noticed a sign on top of the cash register that read something to the effect of “If you have food allergies, please talk to the manager before placing your order.”  It’s great they’re recognizing the fact that there are food allergies out there, but… the cash register is at the end of the counter, and only reached well after you place your order.  Also, I’d hope that someone with food allergies would already have a heightened awareness when going anywhere to eat.  (If not, please read this.) More thought needs to be put into place, not just “CYA” measures.
  • They have to exude reassurance. A poster is great.  An “allergy-friendly” menu is great.  A sign at the cash register or on your table or on the salad bar is great… but not enough.  In with the training on all levels, the sever (or whoever answers the phone) must bee confident with the answers that you want to hear.  No “I don’t think” or “not really” or “I’m not sure so you’d just better not order that” will do.  Have the right answers.  Know why.  Understand the severity.  Knowledge of the kitchen and where everything is cooked should be a must for servers and managers.  Nuts can’t just be “picked off”.  There’s no such thing as “oh a little won’t hurt” with butter.  The fryer doesn’t “get hot enough to kill anything you’re allergic to”.  It’s unsettling fr someone with food allergies to dine out.  Making them feel safe is a must for “friendliness”.
    • On a related note… especially the person answering your phone.  When dining out of town, I try to call ahead (or get my wife to call ahead for me).  My favorite response ever was an Amish place in Ohio where I asked if they had shellfish (“like shrimp or crab or oysters” I said)… the girl went on to say “No, we have oysters, but they’re in soup, and there’s shrimp… but it’s not in a shell.”  Needless to say, we didn’t go there.
  • All allergies are equal. It’s great to see “nut free” options, or “gluten-free” menus, but let’s treat all allergies with the same respect to cross contamination.  The top 8 are; Milk, Egg, Peanuts, Tree Nuts, Fish, Shellfish, Soy, & Wheat.  But, there are others too!  I know of people with severe allergies to peppers, and have heard of corn allergies.  These people need to feel safe too!  Current government regulations don’t regulate the labeling of any allergens other than the top 8, so that’s all that people seem to pay attention to.  Special attention needs to be given to all kinds of allergies, not just one allergen or group of singled-out allergens.
  • Know what you’re serving. Are their anchovies in the Italian dressing or Worcester sauce?  Is this fried in peanut oil?  The server shouldn’t necessarily need to know off hand, but this information should be able to be provided upon request. Having it in written form would be tremendous.  (We could go into other special dietary needs here too… not an allergy, but I have an aunt with Diverticulitus who needs to know if there are seeds or nuts that may be ground up and hidden in things like dressing or soups or bread.) Listing all this on a website would be excellent.
  • Separate locations & utensils for allergy-free meal preparation. Cross-contamination is huge.  I don’t worry about a mutant lobster crawling into my mouth by itself… but I do worry (immensely) that some scallop juice might be on the grill where my steak was cooked… or that someone who just made a shrimp cocktail didn’t wash their hands before making my salad.  I’d love to know that the place where I’m dining has a fish or shellfish only fryer, separate grill spaces for different kinds of meat (even a vegetarian/vegan section would be cool), even separate cutting boards, prep areas, knives, and other utensils.
    • Keep the nuts off the salad bar… near their own station.
    • Hey Subway, don’t put the “seafood” sub stuff right next to the other lunchmeat, and don’t cut those subs with the same knife you use for all the other subs!
  • Ability to accommodate the unusual. Say someone has an inhalation allergy to peanuts…  Can you seat them somewhere so that the people at the next table are able to order some peanut-encrusted dessert without throwing them into an anaphylactic fit?  Can you do this without rolling your eyes, sighing, and making it a big deal?
  • Special markers/identifiers. I saw a commenter note this in the comments on the Allergy Eats blog post, and it’s absolutely brilliant.  Something ought to be a literal red flag… in the system, on an order ticket, on the check, on even the plate itself.  Everyone knows that orange-rimmed coffee pots mean decaf.  Why not red for allergies?  Or get crazy & assign a color to each of the top 8 & one for “other” allergies?  Did I read that Legal Sea Foods does double-plating or something to that effect?  It’s genius.  I’d like to extend the symbols idea to the menu too… why not have some sort of system with easily recognized food allergy icons?

That’s my take for now, but there are already many other great suggestions in the comments section over at Allergy EatsPlease, take the time to send yours to contact@allergyeats.com before Feb. 2nd!