Hot off the Presses!

We’d like to congratulate Gina Mennett Lee, M. Ed. on her first book publication!  We are so excited for this.
Gina and her co-author Laurel J. Francoeur, Esq. have written a handbook for best practices useful for Preschools and beyond.  To read a review of the book visit Gratefulfoodie.com here.
Check out this great offer for our parent/caregiver support group below!
preschool book gina
Special offer for Support Groups!
 
Support groups receive 20% back plus free shipping now through 
December 5, 2014.
Just in time for the holidays, we are offering a special promotion to support group leaders only. For any copies we sell of the Preschool Food Allergy Handbook at full price, the authors will donate 20% of the price to our support group.
Orders will be taken via email at info@foodallergyednetwork.org or at our Parent/Caregiver group this Monday Nov. 17th.
You can sell to group members, family, friends, schools, local doctor’s offices, etc. This is a quick and easy way to earn money for our group.
COST Per Book $34.95

(please make out checks to Food Allergy Education Network)
OR
Purchase books at the reduced price of 20% off and donate to your local library or preschool on behalf of your group.
Orders will be taken via email at info@foodallergyednetwork.org or at our Parent/Caregiver group this Monday Nov. 17th.
Order forms and payment must be received by December 5, 2014  to ensure holiday delivery.

He’s Not A Picky Trick or Treater…He’s Scared

By Robin Comey

Our family loves trick or treating. Our kids really do. We live in a close knit neighborhood, houses elbow to elbow, the streets full of wandering families. In this beach front community, it’s a last vestige before we hunker down for the winter. We go out in groups of at least 25 kids, ages 0-12 with accompanying parents shouting out “CAR!” as we make our way through the narrow streets. It’s a pastime none of us miss out on unless we have a sick kid relegated to answering the door in their jammies. Leaving our food allergic son behind never even crossed our mind.

Being that I am on what seems likes every single food allergy related Facebook page, my newsfeed is jammed with the Teal Pumpkin Project. To give credit where credit is due, Food Allergy Community of East Tennessee (FACET) began this movement and then Food Allergy Research and Education (FARE) with their enormous arms embraced the concept and, well, the rest is history. According to the FARE website, the Teal Pumpkin Project is designed to promote safety, inclusion and respect of individuals managing food allergies – and to keep Halloween a fun, positive experience for all. I see a lot of coverage on it, but then again I am most likely to see it, I’m just not sure the exposure on non food allergic families. Oh, and I love removing the food.

So here’s the scenario each halloween for my PN/TN legume allergy kiddo. Our mob arrives at your door, 10-15 kids navigating stone walkways and stairs in a hinderance of a costume. My son gets to the door and it’s like someone hit slow motion. Other kids may look at the halloween decorations, the lighted pumpkins or the dressed up ghoul at the door. His eyes lock in on the bowl of candy. I know all kids are into the candy, but clearly you have to admit, it’s not as scary when your life is in your hands. What is the right choice? Is there another bowl on the table over there with any other choices? He’s walked away from a bowl of Reese’s Peanut Butter Cups and Baby Ruth’s more times than we can count. Even if there was something else in the bowl that he could eat, he wouldn’t dare get near it.

This year….well we’ll see…because you can never tell where a kid’s head is at when it comes to his safety and his developmental understanding of his food allergies.  But last year, to his credit, he was very clear at each door. “I’m allergic to peanuts.” (Of course the Mom in me is saying “Not just peanuts, ALL nuts!”) But he knows that. He just forgets to mention it sometimes.

And yea. To those neighbors that think that he’s taking a little bit extra time to pick out the candy, he’s worried. He doesn’t even want nuts in his bag. He doesn’t want to take them out of the rotation at the end of the night. If someone throws something in his bag, he alerts us right away and we have to remove the offending candy bar right there on the darkened street. He wants exactly what he wants and nothing more and nothing less. I love that about him.

We have a wonderful ex-home daycare provider, Betty, that for years we hoof our way over to knowing that she will give him tattoos or stickers, especially put aside for him and his friends who also have food allergies. She has kept many food allergic kids safe over the years. We all flocked to her as a safe place for our kids, with someone who got it.  I have actually, at times, felt a little sorry for the neighbors who didn’t have a nut-free candy option for him. They certainly didn’t mean they want to harm to my son by providing a bowl full of peanuts. I get the feeling it’s sometimes the only time of the year people get to say, “I love this candy, so I’m sure the kids will love it.”

Well this kid loves halloween. He loves dressing up. He loves wandering the neighborhood in a frenzy. And, yes, he loves candy. He loves choices more.

So back to the Teal Pumpkin Project. I have not yet told him about it really. When I mean really, I mean not at all. It might be that I don’t want to get his hopes up. I mean how many people will stray out of their comfort zone and age old habits? We’ll just have to see.  I’ll just be so happy when I see one pumpkin in teal or a sign.  I’m know it will be at Betty’s house. Then I’ll tell him.

The-Teal-Pumpkin-Project-2

 #tealpumpkinproject

Proof that one person CAN make a difference!

Dear Friends,

Gina Mennett Lee has left an ever-lasting effect on the food allergy community, in Connecticut and across the country.

Her local efforts began with a sincere ambition, to find like-minded individuals with whom to share the challenges of parenting a child with food allergies. We are truly blessed that we were two of the lucky parents who were asked to embark on this journey with her.

In her five-year tenure as President of The Food Allergy Education Network, Gina was never afraid to tackle the tough issues. Her leadership at FAEN helped many individuals and her advocacy benefitted our entire food allergy community. Her vision was purposeful and advanced the mission of the organization. Personally, she strove to be fair on the emotionally charged issues that arose, which illustrated her level-headed leadership style. We admire her as a leader and advocate.

It’s been a joy to see Gina grow over the past several years into an expert in the field of food allergies. We are incredibly proud of Gina’s hard work, dedication, and success.

We would like to extend our deepest thanks to Gina Mennett Lee for the selfless time and extensive effort she gave advocating for children and families with food allergies. The Food Allergy Education Network will continue to support our children and families and advocate in the local community, thanks to the foundation that Gina built. We are proud to call her our founder and our friend.

Gina, we wish you continued success along the new path you’re blazing on your journey with food allergies.

 

Sincerely yours,

Erin Spaulding and Robin Comey

Thank You!

Dear Friends,

 

I am writing to let you know of my decision to step down as the President and Executive Director of Food Allergy Education Network.   This has been a difficult decision for me, as FAEN has been a primary focus of mine for the last 5 years. I know that this organization makes a difference in our community, and I am proud of the services and resources that we provide. However, my position has been a full-time, volunteer job and I no longer have those hours to give. My passion remains as strong as ever, but I feel I can better serve the food allergy community by reaching the widest audience possible. To that extent, for the last year or so, I have been serving as a food allergy consultant for parents, schools and businesses and working on projects on a national scale.

 

Five years ago, FAEN was just an idea.   I could have never anticipated that we would accomplish all that we have in such a short period of time. This would not have been possible without the hands and hearts of many people. From Daniela Balzano, who offered me the room to hold my first meeting, to Theresa and Anne (the only 2 people to attend that first meeting), to the full team of volunteers that we have now and everyone in between.   I am extremely thankful to every person who has lent their time, attended an event, donated funds or services, shared a story of how FAEN has helped them, or supported us in any way. It all has made a difference and continues to be the motivating force behind FAEN’s mission.

 

I am especially thankful to my family for their support over the past 5 years. My parents and their friends constituted our sole financial support in the early years of the organization and still continue to be our largest donors. I will be forever grateful to them for believing in me and supporting FAEN’s mission.   For my husband and children, there were many, many days and nights when I was unavailable while working on FAEN. They understood my passion and supported me. I am looking forward to devoting more of my time and energy to them.

 

I am leaving FAEN following our most successful year yet. We have the largest funding in place we have ever had, and all of our programs are successfully established. FAEN will be left in the very capable hands of Erin Spaulding and Robin Comey, two talented women who helped to create and build FAEN to what it is today. I am confident in their ability to guide this organization and I am excited to see all that FAEN will accomplish in the next 5 years.

 

Thank you all,

Gina Mennett Lee, M.Ed.

Founder, Food Allergy Education Network

FAEN Receives Community Outreach Grant from FARE

We would like to extend a heartfelt thank you to Food Allergy Research & Education for providing new grant funding opportunities to support groups this year.  We applied for and were awarded a Community Outreach Grant through FARE.  We were excited to receive funding in excess of $4000 for our local non-profit.

 

Print

 

The grant money from FARE will be used for the following:

  • Kyle Dine (Food Allergy Awareness Week 2014)
  • Coloring Books for Children
  • To purchase and donate food allergy books to local libraries
  • Printing costs for our community resources
  • Printing costs for our “You Could Save a Life…” poster
  • Funding for our Guest Speakers
  • Website Upgrades and Maintenance

Thanks again to FARE for this important funding so we can continue our mission to serve CT families and communities!

 

Food Allergy Awareness Week 2014 was our Best Yet!

Thank you all for a wonderful week!  For the third year in a row, Food Allergy Education Network was able to secure a proclamation from Governor Dannel P. Malloy declaring May 11-17, Food Allergy Awareness Week in the State of CT.  We were able to raise funds, educate the public, and provide resources to those who need it all in honor of FAAW!

On Monday morning, our President and Founder, Gina Mennett Lee was interviewed by Sarah Cody of Fox News CT.  They were able to discuss important topics such as: food in the classroom, stock epinephrine legislation and epinephrine auto-injector training.  She was also able to promote our 2nd Annual Dance-a-thon featuring, none other than, Kyle Dine!  To view the interview, click here

Throughout the week, important resources were available for downloading on our website including:  Morning Announcements, Tips for Coaches, and our “You could save a life…” poster. The Owenego

On Friday, we hosted our 2nd Annual Dance-a-thon and Silent Auction fundraiser at the beautiful Owenego Beach and Tennis Club in Branford, CT.

One of the best parts of this week, for us, is being able to honor those that care for our children all year long through our FAEN Hero Awards. This year we were thrilled to honor many school officials and employees for “demonstrating diligence in keeping children with food allergies safe,” and for “recognizing that children with food allergies are part of their community.” FAEN AWARDS-# school

Pictured above starting on the left:  Hamlet Hernandez, Ginger Dendas, and Michael Krause Our Award recipients were:  Superintendent of Branford Public Schools, Hamlet Hernandez, the Branford Board of Education Chairperson, Michael Krause, Third Grade Teacher, Julia Verrillo, Fourth Grade Teacher, Ginger Dendas,Lunch Aide, Cathy Care, BranfordSeven owner, Steve Mazzacane, Mommy Minute/FOx New CT/Hartford Courant Reporter, Sarah Cody, Ernest Gebers, and Dee’s One Smart Cookie.

 

Friends

 

We also encourage children to nominate their friends for the FAEN Friend Award.  This year, the recipients were Noah Huntley and Avery Karasinki.

 

We surprised food allergy rock star, Kyle “Michael Jackson” Dine, with our FAEN Hero Award for “his continued dedication to educating the public, empowering those with food allergies and raising awareness through the power of music.”  Thank you Kyle!!

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Pictured here is FAEN Child Advocate Award recipient , Hayden Wrann, and his mom, Emily.

Lastly, for the second year in row, we have honored an exceptional child with the FAEN Child Advocate Award.  This award is given to those that demonstrate an ability to advocate or educate publicly.  This year, we were happy to honor HAYDEN Wrann for his exceptional work on “Hayden’s Food Allergy Video”.

Thank you all for a wonderful FAAW!   A special thank you to our FAAW Committee (Gina Mennett Lee, Erin Spaulding, Emily Oakes, Kari Panuccio and Robin Comey) and our event volunteers (Farhan Soomro, Shahida Soomro, and Gean Carlo Rubio). All year long, we will continue our mission to educate and raise awareness on behalf of those with food allergies.

Is Food Really Love? *

By Gina Mennett Lee, M.Ed.

Someone recently said to me, “Food is love.  Love is food.” And my response was, “I love food, but I love people more.”

I’m of Italian heritage.  If you are Italian, you know this means that food is central to all gatherings.  I have fond memories of visiting my Nana and having her give me a piece of day old bread dunked in her homemade sauce.  “Taste this.  Tell me what you think?”  Or of my father making me “test” the meatballs before adding them to the sauce by frying up a few.  “How are they?”  he would ask, (as if he didn’t already know that they were delicious.)  Anyone that knows me, knows that I love “good food”.

But is food love?  Is food really what bonds us? .

These are important questions in a society where food is literally everywhere.  Where obesity rates have climbed to all time high, and in a society where 1 in 13 children can have a fatal reaction…to food.

Ever since my daughter was diagnosed with food allergies, I have had to reexamine my own relationship with food as well as our culture’s relationship with food.

What is it about food that people literally feel such a guttural response to?  One answer, I guess, would be very simple. We need food to live.  The need for food, for sustenance begins as soon as that first cell divides.  And I suppose, initially we bond with those that supply us with food.  But research shows that infants that are given purely what they need to sustain life: food, water, a place to sleep, but don’t receive love, will die.

So, as I stated, I’ve been giving this a lot of thought.  What was it that made me feel “loved” when my Nana made me my favorite dish, her homemade gnocchi?  Was it the taste of the delicate pillows of pasta that were hand rolled off the tines of my Nana’s fork?  Was it the special recipe, the ingredients?  Or was it something else?

I think what made me feel loved was knowing that she worked for hours creating something just for me.  I know now that it really was not the food that made it special.  I know this because gnocchi really doesn’t taste the same since she died, even using her recipe.  It really was not the food.  It was her.  It was the sharing.

So, to you, my community, my daughter’s community, I ask you to really think about it.   When we break bread together, does it matter what kind of bread it is? Or are we breaking the bread because it a symbol that we are sharing something more important than food?  We are giving and receiving.  We are caring for one another.  Isn’t that what being a part of a community is all about?  We can’t care for one another, we can’t truly be a community, if we exclude people.

So the next time that food enters the equation, I beg you to think of the 6 million children and 9 million adults that need to be careful about every bite they take.  When planning an event ask, “What are we trying to accomplish by having this event?”   If we can achieve the same result without food, let’s get rid of it.  If we need the food, ask: “Are there better, healthier, safer options that could work for everyone?”   Because what matters most is not really the food that is on the table.   What matters most is the people that are gathered around that table.

*This blog was written a couple of years ago.  I am reposting due to requests.

New Study Confirms: Anaphylaxis is a REAL THREAT. Need to Recognize Signs. Carry & Use Epi.

By Gina Mennett Lee, M.Ed.

President & Founder, Food Allergy Education Network, Inc.

A study by Asthma & Allergy Foundation of America, (published 2 days ago in the Journal of Allergy and Clinical Immunology) finds that “severe life-threatening reactions—anaphylaxis—are common in the U.S.”   Let me repeat this…life-threatening reactions are COMMON in the United States.

Just how common?

“According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).”

Why is this important? 

This is the first large-scale study of it’s kind to determine the actual prevalence of anaphylaxis.   This study gives solid data to support what we are experiencing as food allergy advocates and educators.

Some interesting Stats:

  • “The most common triggers reported were medications (34%), foods (31%), and insect stings (20%)”
  • “Only 11% of those that experienced anaphylaxis used epinephrine”
  • “Only 10% called 911″

The most disturbing finding was that most people were unprepared to respond. 

  • “Only 52% had ever received a prescription for epinephrine”
  • “At the time of the survey, 60% did not have epinephrine available to them”

Now some of this is not “news” to those of us in the food allergy world.  Last year around this time, I wrote a post about the shockingly high number of families at the FARE Walk that did not have their child’s epinephrine with the them.

But it is not only children that we need to look out for.  In my role as a food allergy educator, I have many conversations with adults with food allergies.  I always ask if they carry epinephrine and most times their answer is “no”.

What does all of this mean?

Once again the message is clear.

ANAPHYLAXIS IS REAL.  

ANAPHYLAXIS IS LIFE-THREATENING.

ALWAYS CARRY YOUR EPI.

USE YOUR EPI WHEN EXPERIENCING ANAPHYLAXIS. 

We need to get this message out to those that need it most if we want to prevent unnecessary deaths.

One last concern:  I am wondering why only 52% of those that have experienced anaphylaxis have ever received a prescription.   Does this indicate a larger issue…that epinephrine is not prescribed even when indicated???

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Resources:

Please download our FREE ” You Could Save Life…” Poster & Share with family, friends, schools and businesses.

FAEN Poster 8 x 11- web

Kids with Food Allergies Foundation (A division of AAFA) created this excellent 2-page guide for parents of children with food allergies.

steps-to-avoid-allergic-reactions

More more information on the study, click here.

United States Food Allergy Action Plans Not Aggressive Enough?

By Gina Mennett Lee, M.Ed.

President & Founder, Food Allergy Education Network

Statistics indicate that in the United States we woefully underuse epinephrine to treat allergic reactions.  In fact, in a journal of Pediatrics article from February 2012, it was found that epinephrine was administered in only 29.9% of severe reactions of preschool-aged children.

The debate about when to use epinephrine has been a constant one in the food allergy community, but it was further fueled by the tragic loss of Natalie Giorgi to anaphylaxis over the summer   Her story was especially difficult due to the fact that the parents seemed to have acted in accordance with her Food Allergy Action Plan.   After a known ingestion, they gave her antihistamine and observed her for signs of an allergic reaction.  Unfortunately, by the time there were visible signs, Natalie’s reaction could not be halted even with 3 doses of epinephrine.  This made me and others in the food allergy community start to really question our approach to allergic reactions in this country.

Jennifer Van Evra of Allergic Living conducted an excellent interview on the topic here.  What struck me most while reading this article was one particular quote from Dr. Susan Waserman, “We [Canadian allergists] propose that epinephrine be given, at the first sign of any reaction.”   This means that in Canada they recommend the use of epinephrine at any sign, even if it is “only hives” or “only localized”.  What a dramatically different approach!  Could we in the United States, be preventing  unnecessary deaths by adopting this approach?  It certainly would make the decision-making process easier for those who care for children with food allergies.   There is much apprehension on the part of parents, caregivers, teachers, and school nurses when it comes to the question of when to use epinephrine.

Let’s take a look at two different food allergy action plans.

This one is from FARE and used in the United States.  On this action plan, there are two sets of instructions, one for “mild symptoms” and another for “severe symptoms”.

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This one is from Anaphylaxis Canada and used in Canada.  Here there is only one set of instructions ( as seen in the third section).  “Act quickly.  The first signs of an allergic reaction can be mild, but symptoms can get worse very quickly.  1. Give epinephrine…2. Call 9-1-1…”

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Imagine being a parent, caregiver, teacher, or nurse reading these food allergy action plans.

Which one do you think it easier to understand and to follow?  Which one leaves less uncertainty about when to use epinephrine?  To me the answer is very clear.  Are there any drawbacks to this more aggressive approach?

I think it may be time for the medical community in the United States to take a hard look at this and rethink their approach.  Consistent and clear instructions about when to use epinephrine truly are needed in order to ensure that those with food allergies will receive the proper emergency treatment.

What do you think?

Hayden’s Food Allergy Video

 

 

 

 

 

Wrann Family

Last week I received a text from our medical advisor stating that a family he works with created a video that I should see.   I looked it up on YouTube and was surprised to find that the family was one of our FAEN families. I immediately contacted Emily to ask her about the inspiration behind this video.  Below is our interview.  I believe that it is an excellent tool for teaching younger children about food allergies and what they can do to keep their friends with food allergies safe.   This family was able to keep it simple enough for children to understand without weighing them down with the difficulties of label-reading, labeling laws, and other issues.
I want to say a special thank you to Emily and her family for making a video that will benefit the entire food allergy community.  They want this video to used and shared.  Please support this family’s vision by leaving a comment here and by sharing their video.
Best,
Gina
First, can you tell me a little bit about you and your family.

My husband and I have been married for 14 years.  We live in the Ivoryton section of Essex, CT.  We have 3 kids; Chloe age 9, Hayden age 7 and Daphne age 4.  Hayden is the only one of our children with food allergies.  We’re a very active family.  We love to hike and fish.  In the summer we take lots of day trips to zoos, museums, beaches and parks.  We love to vacation in Disney World.

Can you tell me what inspired your family to create this video?

The inspiration for this video was the custom photo book I have been reading to Hayden’s class every year since he started school.  The voice-over was scripted by my brother based off of the book.  The message we hope to share with other kids is that food allergic children are normal kids who have to take simple precautions to keep safe.

Who do you hope will view this video?

We would be honored to see this video shared in elementary schools.  We kept the video fairly generic so that it would apply to most, if not all students who manage food allergies.  We don’t mention how severe or how minor a reaction can be.  We only mention that it could make someone sick.  In my experience, Hayden’s allergies at school have been very well received by his peers but I do worry that there are children who will keep their distance because they are scared they’ll make him sick or because he has a condition that makes him a little different.  When I have shared the photo book in the past I felt that it took the mystery out of medications and none of the children questioned why they are washing their hands again (and again!)  I have heard from parents of Hayden’s classmates that their children have reprimanded them for packing a snack that wasn’t safe for the classroom.  I’ve heard that their children have wondered aloud at the dinner table if something was safe for Hayden to eat.  Its aways great to hear that the children really absorb and  feel compassion for this condition.Part of the message is that classmates should tell a grown up if Hayden feels sick.  I think children at this age LOVE to be given a special job and they take is seriously.  During my presentation to the class I also pass around trainer Epipens (this year we’ll share the new Auvi-Q as well) so the children feel important, involved and are not afraid of the medication.  At the end of the school year I follow up with PAL awards and PAL pencils for each classmate to thank them for their vigilance and Protecting A Life (part of FAREs program online).

What has been the response?

We’ve had over 550 views on our video in 3 days.  I’ve received praise from doctors and numerous teachers.  It’s a wonderful feeling to think that this will not only help my son and his peers but that it could help others as well.  The videographer that volunteered his time to film this video said he was happy to take part in a project with a positive message.

 Would you recommend other families create their own video?

From a mothers perspective its a great keepsake of my family at this point in our life.  I am lucky enough to have a brother who is involved in the film industry as a hobby who was excited to take this project on.  After he had written the script we spent five hours filming and I’m sure he spent MANY hours editing.  Filming with kids produces MANY bloopers. I feel confident that we were sending a positive message and I think if others can do that it would be great!

What advice would you give them?

Think broadly if you want to help others.  Hayden avoids about 20 foods but we don’t mention those in the video.  Not only would it limit our audience but its irrelevant to my sons’ classmates.  (And there’s always my hope that he’ll outgrow one of his allergens before he outgrows the video!)

 Is there anything else you would like to share?

I’d love to see more positive messages about food allergies.  One of my pet peeves is when I hear people say their children ‘suffer’ from food allergies.  My son does not suffer.  My son ‘manages’ food allergies.  Does he have times of disappointment?  Sure.  But EVERY child has times of disappointment.  Is he physically uncomfortable because of his allergies?  Sometimes.  But we all have times like that.  That’s just life and this is the challenge we’ve been given.  And it’s okay.  Sometimes it’s hard but most of the time it’s okay.

Well said, Emily!!  I absolutely agree with you regarding the need for more positive messages about food allergies and you have certainly accomplished that with this video.  Thank you for taking the time to answer my questions and for creating this excellent resource.
By Gina Mennett Lee, M.Ed.
Founder, Food Allergy Education Network