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By: | AFAA CEO & Editorial Contributor
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines.
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines. On Monday, August 10th, 2015 FARE sent out an email to support groups nationwide calling us to action as a community to support Ms. Mandelbaums efforts. You can see the email below, as well as the downloadable template to fill-out and send to your state Senator. 

For those in Arizona it is as follows: 

Flake, Jeff - (R - AZ)Class I413 Russell Senate Office Building Washington DC 20510(202) 224-4521Contact: www.flake.senate.gov/public/index.cfm/contact-jeff

McCain, John - (R - AZ)Class III218 Russell Senate Office Building Washington DC 20510(202) 224-2235Contact: www.mccain.senate.gov/public/index.cfm/contact-form

Call to Action from FARE:

Background:  FARE has been working with Senators and Representatives to encourage improved airline policies with respect to food allergies.  We are pleased to report that Senators Mark Kirk (R-IL) and Senator Jeanne Shaheen (D-NH), along with Senator Mark Warner (D-VA) have introduced S. 1972, which includes the following provisions:

-a requirement that airlines stock epinephrine auto-injectors (EAIs) in all aircraft within six months;

- an interim requirement that the 1:1,000 epinephrine vials currently included in airline emergency kits be labeled for the treatment of anaphylaxis;

- a requirement that airline crew members be trained on how to administer EAIs; and

- a report to Congress by the General Accounting Office on current airline policies regarding issues including the extent to which airline food allergy policies are transparent and accessible,  the steps that could be taken to develop a model policy, and the incidence of inflight allergic reactions and administration of epinephrine.

Requested Action:  FARE is asking all support groups to send letters to their Senators asking that they co-sponsor S. 1972  Attached is a model letter. PLEASE PARAPHRASE THIS LETTER SO THAT SENATORS DO NOT RECEIVE MULTIPLE COPIES OF IDENTICAL LETTERS.  Please prepare two letters (one to each of your Senators) on your group’s letterhead (or with the name of the group clearly visible at the top and contact information at the bottom) along with information that supports who your group is, the geography you serve, etc..  In the body of each letter, be sure to insert the names of each Senator and the name of your support group (in the blank in the first line).  

If you are uncertain who your Senators are, please go to:

http://www.senate.gov/general/contact_information/senators_cfm.cfm?OrderBy=state&Sort=ASC

The mail to the Capitol is extremely slow.  In order for your Senators to receive your letters promptly, please email them to me and I will share with FARE’s Capitol Hill representative:

sriccio@foodallergy.org

We will bring your letter to the attention of each Senator’s office.  
If you have questions about the bill or this request, please do not hesitate to contact me.

As with the School Access to Emergency Epinephrine bill enacted in 2013, FARE’s chances of success in advocating for this legislation requires active involvement of all support groups.  Thanks for working with FARE in our efforts to make airline travel safer for individuals with food allergies.

We also acknowledge the important support of our coalition partners at AANMA, AAFA, and The No Nut Traveler, who have all also endorsed this legislation.  

Thank you all,

Scott
Scott Riccio
Senior Vice President, Education & Advocacy
Food Allergy Research & Education (FARE)
7925 Jones Branch Drive, Suite 1100
McLean, VA 22102
Direct: 703-563-3081 Cell: 202-341-5177 Fax: 703-691-2713
sriccio@foodallergy.org
www.foodallergy.org

FARE’S mission is to improve the quality of life and the health of individuals with food allergies and to provide them hope through the promise of new treatments.  Learn more at www.foodallergy.org.


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By: Lilliana DeSantiago Cardenas | AFAA School Epinephrine Advocate & Editorial Contributor
With the passage of SB 1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.
Exciting times are here; our children are off to a new school year.  Unfortunately these are also times of anxiety and fear for many families. With the passage of SB1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.  Also what we can do while schools in AZ become more competent on Food Allergies, Anaphylaxis and how to help our children either with their own epinephrine or with stock.

  1. Most schools will not have stock epinephrine available this year.  By law they are only required to stock if funds have been allocated via the annual budget.  Schools may opt to purchase these through their own funds.  Check with your schools.
  2. Stock epinephrine should never take the place of your child’s prescribed epinephrine.  Bring your child’s prescribed medication to school, make sure it is not expired, label it clearly and provide clear and detailed information to all classroom teachers, aides, and any other adults that will work with your child during the school day on how and when to use it. 
  3. Be prepared and communicate, 504 Plans are essential if your child has food allergies that lead to anaphylaxis. They not only provide information and guidance on how and when to help your child, but it is a legal and binding document that is developed in agreement with school administration, teachers, and parents.   504 Plans also provide you the leverage you need to ensure that necessary accommodations are made in regards to food, medication access, and class room environment.  Also if there are violations to the 504 Plan it is much easier to take legal action and hold people accountable.  Some schools may challenge your child’s ability to carry their epinephrine if there is not a 504 Plan and information outlining your child’s condition and medication requirements.  Make sure you check in with your school administrator and nurse about this.
  4. Share training resources on how to administer epinephrine to all adults who work with your child: http://www.arizonafoodallergy.org/administering-epinephrine.html The thought of injecting epinephrine is scary for most people.  Ease concerns through education and practice with demos.
  5. Be a team! Work with the school as much as possible and understand that they are afraid too. Schools are set up to be educational institutions not healthcare providers so this is totally out of their comfort zone.  They don’t want to put your child in danger.  The more you work with them in a patient and respectful manner, the more responsive they will be.  They need to be educated on the issue, treatment, risks, and emergency management.  The more they understand that the danger is in the lack of responding vs giving someone epinephrine the more they will become comfortable and willing to help.
My experience working with schools for over 8 years on asthma, food allergies, and diabetes is that they want to help, but they don’t really know how.  They are scared and don’t want to get into legal troubles. They don’t want to hurt your child and they sure don’t want a tragedy on their hands.  Education and awareness is key and the way to achieve this is through collaborative partnership between parents, students and school.   

 
 
By: Melissa Enos | AFAA Education Specialist & Editorial Contributor
The more you make this a two-way street, the more complete your child's circle of support will be.
It's back to school time again! If you have a school age child, you are familiar with the shopping and preparing that we get caught up in every single year. If you have a child with food allergies, this entire ritual is also required – and then some. On top of everything you already have to do, you must also take into account the steps needed to make sure your child is safe once school starts. What are these steps, and how can you keep your stress level low while you prep for sending your child back to school? It is not always easy, and the fact that your child's safety is at stake makes this a very serious job. That still does not mean that it has to be a negative experience. With some planning and communication, you can enjoy an open relationship with your child's teacher while keeping your child safe at school.

 

Establish or Update Your Child's 504 Plan

A child's 504 plan should be reviewed every year. The beginning of the school year is a good time to get this done. If your child's 504 plan review is due at a different time, such as mid-year, you can still ask for a meeting to discuss changes or updates to your child's status. This is especially important if there have been changes since the last review.

If your child does not have a 504 plan in place, this is the time to get one. Whether or not children with food allergies can qualify for a 504 plan has been debated in many school districts, but their eligibility has been specifically established in the Americans with Disabilities Act Amendment Act of 2008 (http://www.ada.gov/pubs/adastatute08.htm). You may also wonder whether a 504 plan is necessary if your child's school or teacher has offered informal supports. Although it is great that the school is aware of and willing to work with your child, the truth is that establishing an official 504 document provides your child with the legal protection that verbal agreements cannot provide. Another great resource for getting the process started can be found here: http://www.arizonafoodallergy.org/get-a-504-plan.html. Finally, make sure to have all your documentation together when beginning or reviewing the 504. This means being prepared to provide medical documents and written statements of your child's specific needs. Having all this on hand will help avoid unnecessary generalities in your child's plan and make it as individually specific as possible.

 

Reach Out to School Staff

            A written plan is a great resource, but being active and available as a parent can help establish you as a resource to the school. Get to know your child's teacher and be in frequent contact with him/her via email regarding all school activities, not just those relating to food allergies. Volunteer if possible so that you can see the classroom routines and the teacher's styles. Seeing this first hand can help you work with the teacher to incorporate your child's supports as seamlessly as possible. The more you make this a two-way street, the more complete your child's circle of support will be. An active parent is a great academic and social support for any child, and for a food allergic child, an active parent will also provide that additional sense of safety they need to know they can keep their focus on learning.

 

Prepare Your Child

            How much your child understands and how much your child can participate in his/her own plan is a very individual question. This depends, of course, on your child's age and maturity level. The first thing to remember is to not assume that your child is ready just because he or she is a specific age. One 6 year old might be perfectly ready to carry their own epi and communicate their needs, while another 6 year old is not able to do this yet. As your child's parent, you are in the best position to gauge how much responsibility your child is ready to take.

            Even if your child is not yet able to take responsibility for his or her allergy management, it is still a good idea to talk with your child and inform him or her about being aware to foods and potential dangers. Teach your child to ask questions about whether something is allergy safe, and especially teach your child to only eat foods that are on his or her food plan (packed lunch, snacks provided by mom, etc). For younger kids, AFAA has some great coloring pages that can help to bring up the subject and open the lines of communication: http://www.arizonafoodallergy.org/coloring-pages.html. Ultimately, it is up to the staff at school to keep your child safe, but that also means that school is a great place for the child to begin learning how to manage their allergies independently.

 

            Overall, the fears and anxieties you have when it comes to keeping your child safe at school are well-founded, but that does not mean they have to interfere with the quality of your child's educational experience. It also does not mean that they have to interfere with your ability to enjoy your child's educational experience. After all, soon enough you will have homework, math facts, spelling tests, and science projects to manage! With some planning and preparation, you can reserve your stress for that diorama that your child waits until the last minute to begin. You can also rest easy knowing that you are not alone on this road. The AFAA website has many options for reaching out to other parents, professional organizations, and policy guidelines to help meet whatever needs you may have.

 
 
By: Holly Nace | AFAA Editorial Contributor
I was a young mother, with an incredibly sick child who was not being listened to.
I should have listened.

I knew there was something wrong with my young son.  Appointment after appointment I allowed myself to be quieted by a doctor that was sure I was over-reacting.

What should have been my breaking point was when we rushed to the Emergency Room with our little boy, who was in anaphylaxis shock. Only to return to our Pediatrician, one that we had researched, believed in and trusted with our little one's life, to be shushed again.  It was a freak incident.  "Don't let him have that food." He said.  I felt defeated.

I begged for a prescription for an Epi-Pen.  He said that my son was not big enough for one. My son was over 28 lbs and I was refused a life-saving measure that I felt we desperately needed.  I told them how the E.R. Doctor's said we had just made it in time. WE HAD JUST MADE IT IN TIME. My Pediatrician didn't bat an eye.

All of the memories, the helplessness, and the terror come back to me.  With what I know now, I am ashamed that I did not act sooner.

My young son looked like he was sick on more days than he looked healthy. I asked our Pediatrician if we should be wary of any other trigger foods.  I was extremely hesitant to try peanut butter. I even told our Pediatrician that if and when I had my little boy try peanut butter that we would be in the parking lot of Phoenix Children's Hospital. He laughed at me.  He laughed at me in that small room as I clutched onto my little man.

I was done. I was done being talked down to.  Being talked at, instead of listened to.  I was a young mother, with an incredibly sick child who was not being listened to.

The first visit with our new Pediatrician was for my brand-new baby girl's well visit.  My son was not even present and I told her just a snippet of our history with his illnesses. She immediately gave me an order for allergy testing and a prescription for an Epi-Pen.  I bawled into my new little girl's receiving blanket.  I was just so thankful that she listened, she cared. She assured me that we would figure out what was wrong with him, no matter what. 

I should have listened to the self-doubt, that there was something wrong with my child.  My intuition told me there was an answer.  I let a medical professional make me believe that I didn't know what was best for my child.  That I was overreacting.  I am my child's advocate, their champion, and mother.

My little man is allergic to over twenty-five different foods.  The majority of which were staples in his diet. He is indeed highly-allergic to peanut butter and I am thankful that I at least listened to the tiny voice that said we don't need to try that food.  I did listen.

 
 
By: , AFAA Director of Operations
"A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion"
Picture
Photo courtesy of FAACT
Very exciting news for the food allergy & anaphylaxis community today! There has been much change and what seems like organized chaos amongst the national organizations in our community over the last couple years. Merger's, new start-ups, bloggers taking center stage, state level organizations morphing from support groups to nonprofits in their own right, and more!

The buzz from the community is that of contentment, hopefulness, confusion, and a lot of disappointment. Without pointing the finger at any one organization - there has been lack of compassion, lack of support, lack of advocacy, lack of education, and lack of awareness. This coupled with a general sense of "trying to be everything to everyone".

I have personally worked with each one of the leaders at the new FAACT on multiple levels. Some more than others. I have positive things to say about each and every one of them. How will they fill a void that is greatly in need of repair to help our community?

I could write to tell you about each of their bio's. You can check that out first hand for yourself HERE. Instead I will tell you this: Each and every one of these leaders for the new FAACT, is A MOTHER OF A CHILD WITH LIFE-THREATENING FOOD ALLERGIES! Each of them have also been successful in their own right on a state and national level educating, advocating and supporting the community. They know first hand what it is to have their child diagnosed, work with schools, restaurants and more. They get it!

What exactly are they bringing that hasn't already been brought to the table? They have worked in the food allergy community for YEARS, and know what is working and what wasn't working. Here's what you can find on their site and look forward to in 2014:

Annual Food Allergy Conferences in California, Georgia, Colorado and Pennsylvania.

CAMP TAG, The Food Allergy Gang Summer Camps in California, New Jersey and a Midwestern location TBA.

Teen Conference & Advisory Council

Adult Resources

Civil Rights Advocacy

eLearning

Government Relations

and more!

Arizona Food Allergy has a great working relationship with FAACT, and their leadership. We are excited about the opportunities to work together with a national organization that can help us on a state level here in Arizona, as well as what they can bring to the Nation. Congratulations not only to FAACT and their leadership, but to our food allergy & anaphylaxis community. Let's celebrate this new organization and all the great things we have to look forward to in 2014... Happy New Year ... Here's to new beginnings!





 
 
By: Gladys Marietti, AFAA Editorial Contributor
"On #GivingTuesday – following Black Friday and Cyber Monday – people worldwide will get together online and in-person to kick off the holiday season with a day dedicated to giving back." 
Get Your 'Give' On!  What?!?  

So glad you asked!  Tuesday, December 3rd, is the 2nd Annual Giving Tuesday to Put the Focus Back on Giving this Holiday Season.

On #GivingTuesday – following Black Friday and Cyber Monday – people worldwide will get together online and in-person to kick off the holiday season with a day dedicated to giving back.  Individuals will start off the holiday season and give back to the causes they care about most.

It's your opportunity to give to Arizona Food Allergy!  We are seeking tax deductible contributions in any amount.

Why care?  When someone has a food allergy, their quality of life is compromised.  Maybe you know someone in this situation.  Or, what if you became allergic someday?  Wouldn't you want resources to help you?  My food allergies began in my adult years, and AFAA has been there with education, support, advocacy and research to help me and my family.  

The Arizona Food Allergy (AFAA) is a non-profit organization dedicated to improving the lives of those affected by food allergy and anaphylaxis in the State of Arizona.  It is their goal to bring awareness, understanding, and safety within families and communities by providing educational resources, personal networking experiences, opportunities for community involvement, and funding for research.  We depend on public donations for these programs.

Here's how to Get Your 'GIVE' ON:    

DONATE directly AFAA through our secure PayPal account

AFAA Secure Pay Pal Account

REGISTER and/or DONATE to our Zoo Walks on our secure site - You don't have to walk to give!!

Phoenix Zoo Walk Registration and/or Donation |  www.zoowalkphoenix.org

Tucson Zoo Walk Donation Registration and/or Donation |  www.zoowalktucson.org

How is your gift used?  100% goes to fund programs in local Arizona communities and impacts the lives of those with food allergy and anaphylaxis - as we are a 100% volunteer run organization.  One member states, "AFAA has really helped me to know that I'm not the only one out there with so many severe food allergies. When I first was diagnosed, I went into a depression because there were so many foods I love that I had to take out of my diet.  AFAA members have been so supportive and helped with ideas to replace foods without avoiding social situations".    

- Actual cost ONE child food free AFAA Easter Egg Hunt or Halloween Trunk-or-Treat =  $20. Family pays $0 as these events are paid in full with funds raised through donations to our Zoo Walks.

- Actual cost ONE child - Summer Camp Ye bik'ehgo = $300. Family pays only $45. This amount is offset dramatically with funds raised through donations to our Zoo Walks.

- Actual cost ONE adult - AFAA Food Allergy & Anaphylaxis Conference = $150.  Adult pays only $19-$39. These amounts are offset with funds raised through donations to our Zoo Walks.

Now you know! And, when you know better, you do better.  Please get your 'GIVE' on this Tuesday, December 3rd by donating to AFAA!  We invite you to learn more about us at www.arizonafoodallergy.org 
 
 
By: , | Arizona Food Allergy
PREFERENCE- The Secretary, in making any grant under this section or any other
grant that is asthma-related (as determined by the Secretary) to a State, shall
give preference to any State that satisfies each of the following requirements:... (Excerpt from Text of S. 1884)
President Obama has the School Access to Emergency Epinephrine Act sitting on his desk awaiting signature. Many in the food allergy & anaphylaxis community have seen a lot of buzz about this recently passed School Access to Emergency Epinephrine Act. There are many that are under the impression that this Act is putting epi-pen's in their schools. It. Is. Not. Not directly anyways, although the hope is that it would or may encourage it. So what exactly is this Act all about?

In Arizona, AFAA spearheaded the bill that was already signed into law by Governor Brewer, known as SB 1421. SB 1421 at State level, if budget is provided in that school year - mandates Arizona schools to stock general use epinephrine. If a budget is not provided - allows Arizona schools to stock general use epinephrine. Additionally, SB 1421 provides for school staff to administer epinephrine in good faith and have "good sam" coverage. Arizona also ALREADY has on the books a law for self-carry of epinephrine and asthma medications that predated SB 1421.

So how does the School Access to Emergency Epinephrine Act come into play and what does the bill language say? Well, it is AN INCENTIVE ACT. What does that mean? Does it mean that every state will now supply and stock epinephrine? No. What this means is that if states are able to "check off" all of the requirements listed in the bill, then they will be given preference for ASTHMA EDUCATION GRANTS. It is not guaranteed that they will receive these asthma education grants, only that they will at least be "top of the list" for preference. So for Arizonan's there is no change in our law here, and SB 1421 stands to provide epinephrine in schools as described above.

Where is the silver lining for the food allergy & anaphylaxis community? That said, it sounds like it doesn't really do much for the food allergy & anaphylaxis community - as it is an incentive for the asthma community. The silver lining here is that many in our community have asthma so it is helpful to them, and if anything it is creating more awareness for  the food allergy & anaphylaxis community.