2014 Regional Food Allergy Conferences

In 2014, FARE provided funding for five regional conferences, which are managed by local support groups and volunteers. These events are made possible though FARE’s Community Outreach Grants Program, which gave nearly $23,000 in support to these important education and community gatherings. If one of these events is in your area, we encourage you to attend!

 

Michigan Food Allergy & Anaphylaxis Conference

Saturday, Aug 9, 8 am
Kresge Hall Auditorium
Madonna University
Livonia, MI

http://www.foodallergymiconference.com

 

NY/NJ Food Allergy Education Conference

Sunday, Sept 14, 9 am–12 pm
Saddle Brook Marriott
Saddle Brook, NJ

http://www.tinyurl.com/FARENJ

 

Utah Food Allergy Conference

Saturday, Nov 15, 2 pm
University Guest House Hotel
Salt Lake City, UT

http://www.utahfoodallergy.org

 

Washington FEAST Regional Conference

Fall 2014 (date and location TBA)
Washington State

http://www.wafeast.org

 

Eosinophilic Esophagitis in the Spectrum of Food Allergy

Saturday, Nov 15
ForeFront Conference Center
Waltham, MA

EGID@childrens.harvard.edu

The next FARE National Food Allergy Conference will be held in Long Beach, CA on May 16-17, 2015. Save the date!

2014 FARE Vision Award Winners

The FARE Vision Awards take their name from FARE’s vision statement, which is to make the world safe for people with food allergies. These awards recognize individuals and entities who work to make that vision a reality, and who support FARE in its mission to find a cure for food allergies and to keep individuals with food allergies safe and included.

Our 2014 award winners have gone above and beyond in their efforts to support the food allergy community, and they are truly leaders in making a difference for everyone who is living with food allergies. Awards were presented at the FARE National Food Allergy Conference on Saturday, June 21, 2014.

awards winners with adrian

Pictured from left to right: FARE’s CEO John Lehr; FARE Vision Award Recipient for Outstanding Community Citizen, Anne Thompson; FARE Vision Award Recipient for Outstanding Corporate Citizen, Siobhan Cavanaugh accepting for Mylan Specialty; and pro football player and Mylan Specialy spokesperson Adrian Peterson

Vision Award for Outstanding Corporate Citizen 
Presented to a corporation that has made a positive impact in the lives of people with food allergies and supported the food allergy community through a partnership with FARE.

Presented to Mylan Specialty

mylanlogo

 

 

Through its work and actions, Mylan Specialty has shown its commitment to the food allergy community by helping people live well with food allergies, promoting positive change on behalf of the community, and otherwise supporting the development of a safer world for people with food allergies.

Our 2014 honoree has been a leader in supporting transformative programs focused on increasing anaphylaxis awareness, preparedness and access to treatment for those affected by life-threatening allergies. FARE has been proud to partner with Mylan Specialty on a wide-range of education and awareness initiatives, including this, our first FARE National Food Allergy Conference, for which Mylan is the presenting sponsor. Mylan also is the national presenting sponsor for the FARE Walk for Food Allergy program, which takes place in more than 60 cities nationwide to raise awareness and critical funds to fulfill FARE’s mission. Last year’s walks raised a record $3.6 million to support food allergy research, education, advocacy and awareness programs. Mylan also regularly supports annual programs such as our Teen Summit and the meeting of the International Food Allergy & Anaphylaxis Alliance.

In just this past year, Mylan’s support has made possible several special projects that have advanced the cause of the food allergy community. These include:

  • The documentary “An Emerging Epidemic: Food Allergies in America,” which was produced and distributed by the Discovery Channel in partnership with FARE, and
  • The creation of our new comprehensive educational tool called Your Food Allergy Field Guide, which is designed to help families transition from a new food allergy diagnosis to living well with food allergies. In less than six months, thanks to grants from Mylan and other supporters, FARE was able to distribute more than 100,000 free printed copies of the Field Guide to allergists nationwide to provide to their patients with food allergy, and to create a free digital version on our website.

In addition to these great programs, Mylan has also worked to increase awareness through its Anaphylaxis 101 and Ready2Go campaigns, and to improve access to epinephrine auto-injectors through its EpiPen4Schools and $0 Co-Pay programs. And, as makers of the EpiPen, they are a daily presence in the lives of millions of Americans who are prepared to respond to anaphylactic emergencies.

Vision Award for Outstanding Community Citizen
Presented to an individual volunteer who has gone above and beyond to support FARE and its mission, dedicating herself to educating others and advocating for the cause.

Presented to Anne Thompson

annthompson

Anne has been a passionate advocate and volunteer for FARE and the food allergy community for nearly two decades. When her son Andrew was diagnosed with life-threatening food allergies two decades ago, very little information was available. In 1997, Anne co-founded one of the first food allergy support groups in the country–Mothers of Children Having Allergies, better known as MOCHA, here in Chicago. Since then, Anne has mentored, counseled and taught hundreds, if not thousands, of other families who are struggling with the daily challenges and anxiety of living with food allergies. In fact, families across the country have benefitted from Anne and Andrew’s story through their participation in the 2013 documentary “An Emerging Epidemic: Food Allergies in America,” which was produced by the Discovery Channel in partnership with FARE.

As an advocate, Anne was instrumental in getting District 39, in Wilmette, Illinois, to be among the first school districts in the nation to adopt progressive policies in food allergy safety and inclusion. This policy served as a model for statewide guidelines and later national guidelines. She was also active in advocacy efforts that led to Illinois allowing all emergency response personnel to carry epinephrine auto-injectors, and played an important role in the passage of legislation allowing higher education institutions in Indiana to stock epinephrine.

Anne, along with her MOCHA co-founder Denise Bunning, also helped to launch the first Walk for Food Allergy, which was held in Chicago in 2004. Most recently, Anne’s experiences in helping Andrew navigate his first two years at Purdue University have made Anne a leading authority in the management of food allergies in higher education. Anne has dedicated countless hours and her expertise in this arena to helping FARE develop its new FARE College Food Allergy Program, which was launched in January, and she continues to be involved in its implementation. Anne’s service on behalf of FARE and the food allergy community also includes her current positions on FARE’s Support Group Leader Executive Council as well as on our Advocacy Leadership Council.

Vision Award for Outstanding Fundraising Achievement
Presented to an individual or a group of individuals who have gone above and beyond to raise
critical funds to support FARE and its mission.

Presented to Abbey Braverman, Roxanne Palin and Stephanie Winston Wolkoff

fundraising award

The co-chairs of the FARE New York Spring Luncheon, Abbey Braverman, Roxanne Palin, and Stephanie Winston Wolkoff, are dedicated mothers of children with food allergies. Thanks to their commitment and hard work, the luncheon, which was first held 15 years ago with just over 100 attendees, has become a high-profile event in New York City that attracts more than 700 guests each year and raised $1 million in 2014.

The luncheon’s goals are to raise funds to advance FARE’s mission and to educate and engage supporters. The co-chairs have brought great spirit and energy to helping FARE exceed these goals each year, while creating a fun and festive environment that inspires attendees to become more involved in our cause.

In addition to building a strong base of loyal supporters who return – and bring new supporters – year after year, the luncheon has helped raise awareness of the seriousness of food allergies and anaphylaxis, and highlights FARE’s work through features and interviews in the tri-state media. It has also helped FARE build mutually beneficial relationships with allergy friendly companies.

Founder’s Award
Presented to a public figure or group of public figures who have greatly advanced the vision of a safer world for individuals with food allergies through significant public action.

Presented to U.S. Sen. Dick Durbin (D-IL), U.S. Sen. Mark Kirk (R-IL), U.S. Rep. Phil Roe (R-TN)
and U.S. Rep. Steny Hoyer (D-MD), original sponsors of the School Access to Emergency
Epinephrine Act, which was signed into law on November 13, 2013.

In this – the inaugural year of the Founder’s Award– we are pleased to present it to four of our nation’s legislative leaders who are also champions of the food allergy community.

Last year, Senators Dick Durbin and Mark Kirk and Representatives Phil Roe and Steny Hoyer sponsored and successfully passed the School Access to Emergency Epinephrine Act – which was signed into law by President Obama on November 13, 2013. That law incentivizes states to require the stocking of emergency epinephrine in their schools.

Because of their dedication and dogged commitment to the cause of safety and inclusion for children with food allergies, more states have adopted stock epinephrine laws and more lives will be saved because of their leadership.

Congratulations and thank you to all of our 2014 Vision Award winners!

Food Allergy Action Month Highlights

For the first time,FARE expanded Food Allergy Awareness Week in 2014 by declaring the entire month of May as Food Allergy Action Month. We would like to thank all of you who contributed by taking action – whether it was educating others about food allergies and life-threatening anaphylaxis, making a donation, signing up for a FARE Walk for Food Allergy, advocating on behalf of the 15 million Americans with food allergies, or wearing teal. We were thrilled to see many wonderful photos of people and pets rocking their teal for our #TealTakeover – be sure to check out our photo album on Storify!

Highlights of our first Food Allergy Action Month included:

  1. Thirty-four states and the District of Columbia issued Food Allergy Awareness Week proclamations, and U.S. Rep. Steve Israel (D-NY) introduced a resolution into Congress.
  2. The incredible mom-daughter duo of “Fashion by Mayhem” raised awareness and funds for FARE with their first dress auction. The dress sold for $355 – a generous donation for a dress made from paper and packaging tape!
  3. FARE’s Twitter chat (#FAREChat) provided answers to questions submitted by the community about food allergies and anaphylaxis from Drs. Ruchi Gupta and Wayne Shreffler.
  4. Terminal Tower in downtown Cleveland was lit teal on May 12 and the Duke Energy Center in Charlotte, NC was lit teal on May 18.
  5. Food allergy musician Kyle Dine joined in our #TealTakeover and sang at the Food Allergy Education Network’s annual Dance-A-Thon in Connecticut; his performance was sponsored by FARE as part of our Community Outreach Grants Program.
  6. Recipe Rehab, a competition cooking show, featured a family managing food allergies in an episode sponsored by FARE.
  7. Students in schools across the country dressed in teal and helped educate their peers about food allergies through presentations and by reading facts over the school public address systems.
  8. Numerous media outlets featured stories about Food Allergy Action Month and Food Allergy Awareness Week, including The Huffington PostCharlotte ObserverSalt Lake Tribune, and About.com.
  9. A 100-ft-long soy nut butter and jelly sandwich was constructed in the Chicago area to bring the community together and highlight the issue of food allergies.
  10. FARE’s “Give $15 on the 15th” campaign received great support from the food allergy community in honor of the 15 million Americans with food allergies.

It truly has been a tremendous month, but in order to make a real and lasting difference, we need each member of the food allergy community to continue taking action on behalf of those with food allergies beyond just the month of May. Check out our Action Challenge List for suggested actions you can take throughout the year to make an impact!

Food Allergy Action Challenge – Make Your List!

walkvolunteer

We are grateful for and inspired by the food allergy community’s efforts during FARE’s first Food Allergy Action Month to take action and raise awareness of food allergies and anaphylaxis. Food Allergy Action Month was a huge success, and now it’s time to take it to the next level!

You can join us in making a real and lasting difference year-round by creating your own Food Allergy Action Challenge!  Here’s how you do it: make a list of ways that you want to make an impact and schedule them each month throughout the year. Check out our sample Food Allergy Action Challenge list below for ideas on how to get started! We’ve provided some ideas here to get you started – one for each month leading up to next year’s awareness week!

FARE Food Allergy Action Challenge 2014-2015
June 2014 Continue learning about food allergies by attending the FARE National Food Allergy Conference and our free educational webinars, or viewing an archived webinar.
July 2014 Sign up for a FARE Walk for Food Allergy, recruit others to join you, and set a fundraising goal. You can also find other events in your region by connecting with your FARE Regional Office.
August 2014 During Back to School season you can help spread the word about the Centers for Disease Control & Prevention’s, “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs.” Find out how on our blog.
September 2014 Connect with others by joining a support group, and work with other local food allergy families or hosting a presentation at your school or office.
October 2014 Share our SafeFARE flyer with restaurants in your area to encourage them to get allergen-trained and added to our database.
November 2014 Learn about FARE’s strategic plan for research. If you or your child is interested in participating in a clinical trial, sign up for ResearchMatch.
December 2014 Join our Advocates Network to make your voice heard on federal and state legislation.
January 2015 Create your own fundraiser. From participating in athletic challenges to having a lemonade stand in your front yard, there are lots of ways to create a fundraising event to help raise funds for food allergy research, education, advocacy and awareness programs. Your event will not only support FARE’s mission, it will spark a conversation about food allergies, giving you an opportunity to educate others in your community.
February 2015 Spread the word on social media by sharing facts and resources like our infographic, Discovery Channel documentary, “An Emerging Epidemic: Food Allergies in America,”  and food allergy bullying “It’s Not a Joke” PSA.
March 2015 Become a FARE member. Every new member makes a difference and helps us turn up the volume on critical food allergy issues.
April 2015 Plan ahead for the next Food Allergy Awareness Week and Food Allergy Action Month. Putting up posters, making a presentation, or planning a awareness or fundraising event are just some of the ways you can help support the food allergy cause. Prep ahead by downloading our free resources.

Thank you again for your support of FARE and efforts to raise awareness and take action last month! We look forward to continuing to build momentum throughout the year to make the world a better place for all those with food allergies.

Meet Pete Wright: Attorney and Workshop Leader at FARE’s National Food Allergy Conference

The FARE National Food Allergy Conference is quickly approaching, and we are excited this year to have Pete Wright, nationally known attorney and co-founder of Wrightslaw.com, joining us on Sunday, June 22, to lead “From Emotions to Advocacy: An Expert’s Guide to Safety and Inclusion for You Child At School.” During this 5-hour, hands-on workshop, parents of children with food allergies will learn practical strategies and tips for working with school personnel to ensure their child’s safety and inclusion at school.

Pete was featured in a special “Ask the Expert” web series in fall 2012, answering questions from FARE members about Section 504 plans. Section 504 of the Rehabilitation Act of 1973 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal financial assistance from the U.S. Department of Education. We’ve reprinted excerpts from this feature below.

The 2014 FARE National Food Allergy Conference will be held June 21-22 at the Hyatt Regency O’Hare in Rosemont, Ill. and will feature dozens of world-class experts and panelists providing practical tips and resources for living well with food allergies. Don’t miss this chance to learn from leading food allergy experts – register and reserve your place in the “From Emotions to Advocacy” workshop today.


 

Pete WrightI recently read about the Office of Civil Rights April 23, 2012 resolution of a case involving an Individualized Health Care Plan (IHCP) in the Memphis, TN schools. Their press release stated that:  “If a student currently has an IHCP, the district will provide parents or guardians with information regarding the student’s possible rights to evaluation, placement, and procedural safeguards. An IHCP for a student who has a qualifying disability is insufficient if it does not incorporate these rights.” Does this mean that if a student is considered disabled and needs aides, services, or accommodations, that a 504 plan is the way to document what is needed to allow a food allergic child access to a FAPE (Free Appropriate Public Education)?

If a child has a disability as defined by either the Individuals with Disabilities Education Act (IDEA 2004), Section 504 of the Rehabilitation Act or the Americans with Disabilities Act, Amended Act of 2008 (ADA AA), and needs “aides, services, or accommodations,” the child should have either an Individualized Education Plan (IEP) or a Section 504 Plan, dependent upon the nature of the disability. Per the question, if the disability is solely limited to a food allergy, then an IEP would not be appropriate, but a Section 504 is appropriate.

It is important for parents to understand that an IHCP is not an agreement that provides specific rights and procedural safeguards, but instead is more akin to a nursing care plan.

The concept of an IHCP is not recognized in or created by the Individuals with Disabilities Education Act (IDEA 2004), Section 504 of the Rehabilitation Act or the Americans with Disabilities Act, Amended Act of 2008 (ADA AA). Each of the three statutes do provide procedural safeguards for the student. An IHCP does not provide any procedural safeguards for the student. If an IHCP is created, to obtain the rights and protections of the preceding statutes, it should be attached to and incorporated by reference into either an IEP or a Section 504 Plan and considered as a part of the IEP or Section 504 Plan.

The ADA was revised in 2008 as the result of two U. S. Supreme Court cases that had narrowed the definition of those eligible for protections under the ADA. The 2008 “Amendments Act” has substantially broadened eligibility, thus gutting the impact of those two prior cases. That expansion applies to Section 504 of the Rehabilitation Act. Thus a child found ineligible for either an IEP or a Section 504 plan in 2007 may today, because of the change in the law, be eligible.

The Office of Civil Rights issued a FAQ monograph that addresses the ADA AA, Section 504 and IHCPs. It is titled “Questions and Answers on the ADA Amendments Act of 2008 for Students with Disabilities Attending Public Elementary and Secondary Schools.”

The critical questions are 4, 5, 11, 12 and 13.

Below I have copied and pasted those questions and portions of their answers. I provided the complete answers to Questions 12 and 13. The bold emphasis was added by me.

Q4. How does the Amendments Act alter coverage under Section 504 and Title II?

A: The Amendments Act emphasizes that the definition of “disability” in Section 504 and the ADA should be interpreted to allow for broad coverage. Students who, in the past, may not have been determined to have a disability under Section 504 and Title II may now in fact be found to have a disability under those laws. A student whom a school district did not believe had a disability, and therefore did not receive, as described in the Section 504 regulation, special education or related services before passage of the Amendments Act, must now be considered under these new legal standards . . .

Q5: Should a school district revise its policies and procedures regarding the determination of coverage and provision of services under Section 504 and Title II?

A: Yes, if those policies and procedures do not implement the Amendments Act’s new legal standards. As noted above, the definition of disability is to be interpreted broadly, so determining whether one has a disability should not demand extensive analysis, and the determination shall be made without regard to the ameliorative effects of mitigating measures . . .

Q11: What must a school district do for a student who has a disability but does not need any special education or related services?

A: As described in the Section 504 regulation, a school district must conduct an evaluation of any individual who, because of a disability, needs or is believed to need special education or related services, and must do so before taking any action with respect to the initial placement of the person in regular or special education or any significant change in placement. 34 C.F.R. § 104.35(a). If, as a result of a properly conducted evaluation, the school district determines that the student does not need special education or related services, the district is not required to provide aids or services. Neither the Amendments Act nor Section 504 obligates a school district to provide aids or services that the student does not need. But the school district must still conduct an evaluation before making a determination. Further, the student is still a person with a disability, and so is protected by Section 504’s general nondiscrimination prohibitions and Title II’s statutory and regulatory requirements. See 28 C.F.R. § 35.130(b); 34 C.F.R. §§ 104.4(b), 104.21-23, 104.37, 104.61 (incorporating 34 C.F.R. § 100.7(e)).

For example, suppose a student is diagnosed with severe asthma that is a disability because it substantially limits the major life activity of breathing and the function of the respiratory system. However, based on the evaluation, the student does not need any special education or related service as a result of the disability. This student fully participates in her school’s regular physical education program and in extracurricular sports; she does not need help administering her medicine; and she does not require any modifications to the school’s policies, practices, or procedures. The school district is not obligated to provide the student with any additional services. The student is still a person with a disability, however, and therefore remains protected by the general nondiscrimination provisions of Section 504 and Title II.

Q12: Should school districts conduct FAPE evaluations as described in the Section 504 regulation for students who, prior to the Amendments Act, had health problems but might not have been considered persons with a disability?

A: The answer depends upon whether, because of the health problem, that student has a disability and, because of that disability, needs, or is believed to need, special education or related services. A medical diagnosis alone does not necessarily trigger a school district’s obligation to conduct an evaluation to determine the need for special education or related services or the proper educational placement of a student who does have such need. As explained in Q11, a student with a disability may not need any special education or related service as a result of the disability.

Q13: Are the provision and implementation of a health plan developed prior to the Amendments Act sufficient to comply with the FAPE requirements as described in the Section 504 regulation?

A: Not necessarily. Continuing with a health plan may not be sufficient if the student needs or is believed to need special education or related services because of his or her disability. The critical question is whether the school district’s actions meet the evaluation, placement, and procedural safeguard requirements of the FAPE provisions described in the Section 504 regulation. For example, before the Amendments Act, a student with a peanut allergy may not have been considered a person with a disability because of the student’s use of mitigating measures (e.g., frequent hand washing and bringing a homemade lunch) to minimize the risk of exposure. The student’s school may have created and implemented what is often called an “individual health plan” or “individualized health care plan” to address such issues as hand and desk washing procedures and epipen use without necessarily providing an evaluation, placement, or due process procedures. Now, after the Amendments Act, the effect of the epipen or other mitigating measures cannot be considered when the school district assesses whether the student has a disability. Therefore, when determining whether a student with a peanut allergy has a disability, the school district must evaluate whether the peanut allergy would be substantially limiting without considering amelioration by medication or other measures. For many children with peanut allergies, the allergy is likely to substantially limit the major life activities of breathing and respiratory function, and therefore, the child would be considered to have a disability. If, because of the peanut allergy the student has a disability and needs or is believed to need special education or related services, she has a right to an evaluation, placement, and procedural safeguards. In this situation, the individual health plan described above would be insufficient if it did not incorporate these requirements as described in the Section 504 regulation.

The nature of the regular or special education and related services provided under Section 504 must be based on the student’s individual needs. As noted in Q2 above, the student would also be protected from discrimination under Title II’s statutory and regulatory requirements, as well as Section 504’s general nondiscrimination provisions.

Parents should download and read the Memphis, TN press release and the above FAQ monograph from OCR. Afterwards, to get a better handle on this, parents should go to our wrightslaw.com and read the following:

www.wrightslaw.com/blog/?p=58

www.wrightslaw.com/blog/?p=2831

www.wrightslaw.com/law/504/OCR.va.peanut.pdf

www.wrightslaw.com/info/adaaa.elig.bruce.htm

www.wrightslaw.com/info/sec504.index.htm

www.wrightslaw.com/info/sec504.adaaa.htm

My son’s school principal told me that they handle food allergies with an IHCP. They said any accommodations could be written into the IHCP. My son has life-threatening food allergies and will need accommodations in the classroom, and a trained adult and EpiPens® with him on field trips, etc. In your experience, is it better to have a 504 plan or will an IHCP suffice?

Presumably you have now read the Memphis, TN press release, the  FAQ monograph from OCR and the above articles on our website. Bottom line, you know that there are no protections under an IHCP and it will not suffice. On another note, you write that the principal “told me . . .” Remember, if he did not put it in writing, it was not said. There must be a paper trail. More about this shortly.

If school administrators are going to sit down and write an IHCP, why are they so reluctant to write a 504 plan? Our school says they are “the same.” What is the difference between an IHCP and a 504? What do you recommend for life-threatening food allergies?

A Section 504 plan provides the student with rights and remedies, i.e., it has procedural safeguards, if the school breaches the 504 plan. There are no such procedural safeguards in an IHCP. It is not a legal concept recognized in any of the statutes discussed in the opening answer. Dependent upon the child and other possible issues, I recommend either an IEP or a Section 504 Plan. The IHCP can be incorporated into a Section 504 Plan.

How would you proceed if you were told by a district that, “We don’t do 504 plans for food allergies”?

Again, repeating the answer to the second question, if you were told something and it is not in writing, you are mistaken, it was never said! So, what do you do? The first step is to become educated about IDEA 2004, Section 504, and the 2008 Amendments to ADA that impact the Section 504 eligibility. Read the OCR articles and websites listed above. IDEA 2004 and Section 504 are on our website and also included in our book, Wrightslaw: Special Education Law, 2nd Ed.

Second, once you have a handle on the law and the eligibility issues, then you have to take the same steps any parent has to take to obtain eligibility for their child for either a Section 504 plan or an IEP. You must have an organized file. (See Chapter 9 in our book, Wrightslaw: From Emotions to Advocacy, 2nd Ed.) You must understand all of your child’s test data. (See Chapters 10 and 11.) Then you must understand how to create and maintain a paper trail (Chapter 22) and learn to write good evidence letters (Chapter 23) that do not blame or finger point, but instead create empathy and a desire to fix the issue. This is done using the “Letter to the Stranger” principles (Chapter 24).

When that is accomplished, the parent is able to write a nice letter to the administrators in which they describe their child, the medical/allergy issues, provide the documentation, express some confusion about the law and the OCR documents, provide those documents, and ask the school to help you understand why your child does not fit and why an IHCP is not a Section 504 document and what can be done.

As a part of the self-study, the parent will also need to learn effective negotiation skills that

are in the subsequent chapters of that book. Many of the other questions submitted for this feature were related to “How can I get the school to . . .” The answer is to motivate them, not by a threat of litigation or letter complaint to OCR, but instead by a letter seeking their help to educate you about the law (actually you already know it, but you have created your newly merged personality of Ms. Manners and Columbo) and to provide help regarding your child.

Copy and paste the following links into your browser for more about developing an organized file, understanding the test data, creating the paper trail, and writing persuasive evidence letters using the “Letter to the Stranger” approach.

www.wrightslaw.com/info/organize.file.htm

www.wrightslaw.com/blog/?p=877

www.wrightslaw.com/nltr/12/ss.organize.file.htm

www.wrightslaw.com/advoc/articles/tests_measurements.html

www.wrightslaw.com/advoc/articles/advo.create.trails.htm

www.wrightslaw.com/advoc/articles/12rules_letters.htm

www.wrightslaw.com/nltr/11/ss.short.course.htm

www.wrightslaw.com/nltr/08/nl.0226.htm

www.wrightslaw.com/blog/?tag=paper-trails

www.wrightslaw.com/info/ltrs.index.htm

www.wrightslaw.com/advoc/articles/Letter_to_Stranger.html

www.wrightslaw.com/advoc/stranger/brody.html

www.wrightslaw.com/advoc/ltrs/strngr.joejames.htm

www.wrightslaw.com/advoc/articles/ltr.to.stranger.miata.pdf


 

Pete Wright, an attorney who represents children with special education needs, is the co-author of From Emotions to Advocacy: The Special Education Survival Guide, and co-founder of Wrightslaw, a website specializing in education law and special education advocacy founded by Pamela Darr Wright. 

Resources for Anaphylaxis Awareness Day

Today is Anaphylaxis Awareness Day on our Food Allergy Action Calendar! We encourage everyone to learn about anaphylaxis and how to use an epinephrine auto-injector, or train someone else if you are already knowledgeable.

To help you educate yourself and others, we’ve provided a list of anaphylaxis resources below. From posters to emergency care plans, these materials and information can help you learn and spread the word about how to recognize and treat this life-threatening reaction:

Information about anapyhlaxis:

About Anaphylaxis: Symptoms, Treatment, and Coping
Treating & Managing Reactions
Webinar recording: “All About Anaphylaxis: Understanding the Risks, Symptoms & Treatment” with Dr. Robert A. Wood
Your Questions Answered: Anaphylaxis

Epinephrine resources:

Epinephrine Auto-injectors
2014 Patient Assistance Resources for Epinephrine Auto-injectors

FAAEPthumbMaterials:

Food Allergy & Anaphylaxis Emergency Care Plan (English and Spanish versions available)
Common Symptoms of Anaphylaxis Poster
Common Symptoms of Anaphylaxis Poster (premium version for purchase)
Common Symptoms of Anaphylaxis Magnet

Fast Facts About Anaphylaxis:

  • Food allergy is the most common cause of anaphylaxis, although several other allergens – insect stings, medications, or latex – are other potential triggers.
  • Anaphylaxis often begins within minutes after a person eats a problem food. Less commonly, symptoms may begin hours later.
  • Teenagers and young adults with food allergies are at the highest risk of fatal food-induced anaphylaxis.
  • It is possible to have anaphylaxis without any skin symptoms (no rash, hives).
  • People who have both asthma and a food allergy are at greater risk for anaphylaxis.
  • Epinephrine (adrenaline) is a medication that can reverse the severe symptoms of anaphylaxis. It is given as a “shot” and is available as a self-injector, also known as an epinephrine auto-injector, that can be carried and used if needed.
  • Epinephrine expires after a certain period (usually around one year), so be sure to check the expiration date and renew your prescription in time.
  • About 1 in every 4 patients have a second wave of symptoms one to several hours after their initial symptoms have subsided. This is called biphasic anaphylaxis.

Food Allergy Books for Kids

A great way to raise awareness and educate children about food allergies is to donate a book about food allergies to a local school or public library. FARE has named May 18 as “Learning at Libraries Day,” on our Food Allergy Action Month calendar. This day is a time to encourage your local libraries to stock literature for kids about food allergies – you never know who will check out a book and learn about food allergies for years to come!

Here are a few suggested books to purchase and donate to a library. Or buy two copies and keep one for your family to read at home!

When you purchase one of these three titles, a portion of proceeds is donated to FARE! We hope you’ll choose one of these fun and educational books that also give back!

Nutley the Nut-Free Squirrel

 Nutley_cover

Mangos for Max 

mangos

What Treat Can Ruben Eat? 

ruben

Here are some additional ideas for books to purchase and read or donate to a local library.

If you’re looking for a book to donate that is geared toward teens or adults, consider purchasing one of these reference books:

And remember to start shopping at smile.amazon.com. You can donate a portion of every purchase to FARE when you choose “The Food Allergy Initiative, Inc.” as your charity to support.

Take Action This Week On Behalf of 15 Million with Food Allergies!

It’s Food Allergy Awareness Week! We encourage you to take action that will make an impact for those affected by food allergies and anaphylaxis, a life-threatening allergic reaction.

Earlier this month, we announced the expansion of Food Allergy Awareness Week by declaring the entire month of May as Food Allergy Action Month, publishing a calendar with suggestions on how anyone can take an action each day in a meaningful way. Today, in honor of the 15 million Americans affected by food allergies, FARE is publishing “15 Essential Food Allergy Facts.”

Food Allergy Awareness Week, observed this year May 11-17, was created by FARE in 1998 as a way of bringing widespread attention to a life-altering and potentially life-threatening disease. So far this year, elected officials in 30 states and the District of Columbia have issued proclamations in honor of Food Allergy Awareness Week, and a resolution has been introduced in Congress. FARE is also spreading the word about its #TealTakeover – a coordinated community and social media campaign that encourages individuals, organizations, schools, and businesses to paint their community teal, the official color of food allergy awareness, in order to spark conversation and inspire action.

“Taking action to raise awareness and garner support for a cure is critically important each and every day,” said John L. Lehr, chief executive officer of FARE. “Taking the time to educate yourself about food allergies – even if they don’t personally affect you – can save a life. That is why we want to spread the word this month with our 15 essential facts that will help improve understanding of food allergies.”

Today at 3:30 p.m. ET, FARE will be hosting an “Ask the Experts” Twitter chat featuring Ruchi Gupta, MD, PhD, associate professor of pediatrics at the Northwestern University Feinberg School of Medicine’s Center for Healthcare Studies, and Wayne Shreffler, MD, PhD, associate professor of pediatrics at Harvard Medical School and chief of pediatric allergy and immunology and director of the Food Allergy Center at Massachusetts General Hospital. Drs. Gupta and Shreffler will answer questions about food allergies during the chat moderated by FARE staff. Twitter users can participate using #FAREChat.

On Wednesday, FARE will host a webinar featuring Mike Spigler, vice president of education at FARE, who will discuss FARE’s educational programs as well as provide a sneak preview of FARE’s upcoming National Food Allergy Conference on June 21-22 in Chicago. This past weekend, FARE sponsored an episode of the competition cooking show Recipe Rehab, featuring a San Diego family managing food allergies.

Throughout the country, food allergy education efforts have intensified this month. FARE is providing a variety of resources to families, individuals and businesses to participate in Food Allergy Action Month in a meaningful way, including an infographic, free posters, shareable graphics, bookmarks and more – all designed to educate others and help demonstrate the broad impact that have food allergies have across the nation.

Visit FARE’s comprehensive online headquarters at www.foodallergyweek.org for more information on how to get involved.

Here are FARE’s 15 Essential Food Allergy Facts:

15  Essential Food Allergy Facts

  1. About 15 million Americans have a food allergy.
  2. A food allergy results when the immune system mistakenly targets a harmless food protein as a threat and attacks it.
  3. The top eight food allergens in the United States are milk, egg, peanut, tree nuts, wheat, soy, fish and shellfish.
  4. Even the tiniest amount of an allergen can cause a reaction.
  5. One in 13 children, or roughly two in every classroom, has a food allergy.
  6. The number of children with food allergies is on the rise – the Centers for Disease Control & Prevention reported a 50 percent increase from 1997 to 2011.
  7. Scientists have not yet uncovered the cause for the rise in food allergy.
  8. Food allergy reactions can range from mild to severe. Anaphylaxis, the most severe allergic reaction, is potentially fatal.
  9. Every three minutes, a food allergy reaction sends someone to the emergency room in the United States.
  10. Epinephrine is the only medication that can reverse the symptoms of anaphylaxis.
  11. A food allergy is different from a food intolerance. A food allergy involves the immune system and can cause serious reactions, while an intolerance means having trouble digesting a food.
  12. Food allergies can develop at any age. While many food allergies are outgrown, certain food allergies, such as peanut and tree nut allergy, are typically considered lifelong.
  13. Caring for children with food allergies costs U.S. families more than $24 billion annually.
  14. There is no cure for food allergy.
  15. Teenagers and young adults with food allergies are at the highest risk of fatal food-induced anaphylaxis.

Spotlight on Conference Keynote Speaker Curtis Sittenfeld

sittenfeldWe are delighted to have bestselling author Curtis Sittenfeld, who has written about food allergies in The New York Times and Slate Magazine, delivering the keynote at the FARE National Food Allergy Conference on Saturday, June 21. FARE caught up with Curtis to talk about food allergies and what she’s most looking forward to about the conference.

Tell us a little bit about your background, and what your next project is:
I’m a writer—I’ve written many reported articles, including a profile of Michelle Obama for Time magazine and a profile of Mindy Kaling for The New York Times Magazine, as well as personal essays for places such as Real Simple, Allure, and The Atlantic. These days, I’m primarily a novelist and am working on my fifth book. My earlier books include “Prep,” which is about a girl from Indiana who goes to a fancy Massachusetts boarding school; “American Wife,” which is a fictional retelling of the life of Laura Bush; and “Sisterland,” which is about twin sisters, one of whom garners national attention when she makes a prediction that a major earthquake will occur. My next project is a contemporary re-imagining of Jane Austen’s “Pride and Prejudice.” The British division of the publisher HarperCollins initiated a project in which different writers are writing their own versions of Austen’s six novels. When they asked me to be involved, I found the
invitation irresistible. I sometimes joke that I’m basically writing Austen fan fiction.

What’s your food allergy connection?
I have two children, the younger of whom was diagnosed with multiple food allergies just before her first birthday (she is now three). She’s allergic to eggs, milk, tree nuts, peanuts, and, more randomly, flaxseed.

What have you found to be the most challenging aspect of managing food
allergies?
Hmm, it depends on the day! Being a “food allergy mom” has definitely forced me to plan ahead and also to be vocal if I feel there is a danger to  my daughter (I always try to be polite, but it’s pretty much impossible to pretend to be easygoing). But I’d probably say that I find the anxiety the most challenging—the need to be very alert whenever food is around, and food is
around in most places.

Why did you choose to speak up about food allergies?
For people who haven’t been exposed to them, food allergies and the ways
they affect daily life can be hard to imagine; also, of course, there are some
unfortunate and inaccurate stereotypes about what kind of people have food
allergies. As a writer, I hope that I can get beyond these stereotypes and
convey some of the unique challenges of food allergies in a direct, honest way.

What are you most looking forward to about the FARE National Food Allergy Conference?
I’m really excited to attend various panels and to exchange tips with other
people for handling food allergies. And as a chocolate fiend, I’m hoping that
Enjoy Life will be offering samples!

To see Curtis speak at our National Food Allergy Conference, register today!

Read some of Curtis Sittenfeld’s articles and essays about food allergies:

 

FARE Files Amicus Brief in Food Allergy Discrimination Case

tealgavel200x125A case involving a kindergarten student with a tree nut allergy has the potential to set a precedent for food-allergy-related accommodations in a federal appellate court. FARE, joined by the Council of Parent Attorneys and Advocates, filed an amicus (friend of the court) brief Friday in the civil rights case, T.F. vs. Fox Chapel Area School District, in the Third U.S. Circuit Court of Appeals, one step below the U.S. Supreme Court. 

A federal judge previously ruled that the school district did not discriminate against the child in violation of Section 504 of the Rehabilitation Act, and that the school offered reasonable accommodations, and had not retaliated against the student’s parents when it filed a truancy petition after the parents withdrew their child from school. Among the accommodations that the school offered was special lunch seating at a nut-free table that was actually a single desk in the cafeteria. 

The amicus brief outlines the critical importance of school-wide food allergy management policies, as well as detailed individualized student accommodation plans that not only note policies, but specifically explain how they will be carried out and by whom. We will keep you posted on the outcome of this case.