Two Years of Progress and Action: Thank You for Making It Possible!

IAFFPE AnniversaryAs IAFFPE marks our second anniversary, we are so proud to work on behalf of you and all those affected by FPIES. When we started two Septembers ago, we couldn’t begin to imagine the way our organization’s journey would unfold and all the positive changes that would occur. And there’s so much more to look forward to. Together, we are taking action, raising awareness, and discovering our voice as an FPIES community.

This blog post is focused on key accomplishments from the past year and exciting things ahead. The rest of the week is all about you: the families who inspire us and the volunteers and fundraisers who make what we do possible. We’ll wrap up the week by giving back to our FPIES community: awarding a $500 Travel Grant to the 2013 FPIES Education Conference!

A Few Highlights from a Busy Year

  • In early June, we received news that FPIES finally has an official diagnosis code: K52.21. Securing the ICD-10 code was an ambitious, year-long initiative for IAFFPE. And the letters you wrote on behalf of children with FPIES made an impact. Because of our collective voice, families will be less likely to suffer from delayed diagnosis or a lack of treatment opportunities. When this code is enacted next year, it will change so much, impacting our knowledge, awareness, research, and funding for this condition.
  • This summer, EVERY pediatrician in the U.S received an FPIES Fact Sheet developed by IAFFPE’s Medical Advisory Board (MAB) and distributed by the American Academy of Pediatrics Section on Allergy and Immunology. This was a huge step in educating all frontline providers about FPIES and ultimately reducing the amount of time that patients go without diagnosis.
  • IAFFPE is the only organization actively funding FPIES research. This year, we funded a new CHOP study that has helped shape our understanding of this condition. The findings of this study were recently published in The Journal of Allergy and Clinical Immunology: In Practice.
  • In July, we were also profiled in The Journal of Allergy and Clinical Immunology: In Practice, a journal targeting clinical practices. We were featured in the July issue on Gastrointestinal Allergy, putting a spotlight on the work we do for FPIES patients and further raising awareness among medical professionals. We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).
  • IAFFPE was honored to represent FPIES as an exhibitor at the AAAAI Annual Meeting and the Annual Meeting of the American College of Allergy, Asthma and Immunology (ACAAI). These conferences were exciting opportunities for IAFFPE to educate and advocate for FPIES patients to thousands of allergy experts from around the world.
  • FPIES was in the spotlight as IAFFPE received media coverage from ABCNews, Good Morning America, and The Ricki Lake Show. Our successful campaigns for Rare Disease Day and Food Allergy Awareness Week further spread the word about FPIES and strengthened our place in the rare disease and food allergy communities.
  • You made the difference over the past year with your amazing fundraising efforts on behalf of IAFFPE. Our next blog post will look at some of the fundraising superstars who are helping to fund research and other important initiatives that are changing the course of FPIES.

What’s on the Horizon

  • We are well into the complicated process of developing consensus guidelines for FPIES. Our Medical Advisory Board is partnering with AAAAI (American Academy of Allergy, Asthma & Immunology) and other leading FPIES researchers in Australia, China, Israel, Japan, and Korea. Collectively, this group has published much of the literature that is currently available on the subject of FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition.
  • We are thrilled to share that IAFFPE has been working with our friends at Children’s Hospital of Philadelphia to develop CHOP’s FPIES Center. Led by Dr. Terri Faye Brown-Whitehorn, this will be the first center of its kind devoted to FPIES. IAFFPE is excited to be part of the planning process and honored to give input on the specific needs of the FPIES community. We can’t wait to share more details at the FPIES Education Conference!
  • On the research front, the results of the FPIES survey that so many of you participated in were just submitted as an abstract to the AAAAI. The results appear to be very interesting and different than previous studies. The paper is set to be published in February, and we will be sure to share the highlights with you.
  • On October 20th, IAFFPE is presenting the first national FPIES Education Conference in Philadelphia. This is a unique opportunity to bring our community together and hear from expert speakers on a wide spectrum of FPIES-related topics. We hope to see you there!
  • We’re excited that the medical journal Current Opinion in Allergy & Clinical Immunology is developing a special issue on FPIES. Members of our Medical Advisory Board have been asked to address various aspects of the condition. And we’ve been asked to write an article on what parents want doctors to know about FPIES. This is a unique opportunity for the parents’ perspective to be part of the medical conversation on FPIES!
  • In the coming months, IAFFPE will be launching an Education Ambassador Program with our older FPIES children and siblings. We’ll be asking older kids living with FPIES to share their stories, talents and make a difference.
  • We have some exciting news cooking! Chef Mike Jurusz has just joined our Board of Trustees and is the official FPIES chef. We’re working with him to create a series of YouTube cooking videos that offer creative ideas, discuss common challenges, and ask families to submit their cooking obstacles. We’ll also be collaborating with Chef Mike on the first FPIES cookbook!

None of these goals could be accomplished without support and generosity from the heart of our community, people just like you. THANK YOU! If you’d like to be part of the momentum, we hope you’ll consider donating to IAFFPE or joining us as a volunteer or fundraiser.

We look forward to another year of making a real, impactful difference in the world of FPIES.

Four Things to Know About IAFFPE and the FPIES Movement

IAFFPE Founder Fallon SchultzBy Fallon Schultz, Founder and Chair

As IAFFPE honors Food Allergy Awareness Week, we are so proud to work on behalf of those affected by FPIES. As the leading international foundation for FPIES, we are actively pursuing positive, substantive change to alter the course of FPIES, raise awareness, and best serve the needs of our community.

This update serves another important purpose. It lets you know that your donation to IAFFPE matters; it goes toward making a real, impactful difference in the world of FPIES, from funding research to spreading the word about FPIES through the most powerful national channels. We have embarked on a number of exciting projects; we encourage you to join us as together we launch a new era of FPIES. Here’s what you should know:

1.       Initiatives on the Front Lines
I want to start by highlighting three key initiatives that will have an immediate and lasting impact:

  • We are well into the process of developing consensus guideline for FPIES. Our Medical Advisory Board has partnered with the leading FPIES researchers in Australia, China, Israel, Japan, and Korea; collectively, this group has published much of the literature that is currently available on the subject of FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition. Just imagine the difference that can be made by having formal guidelines for the diagnosis, treatment, and management of FPIES!
  • As you may have heard, EVERY pediatrician in the U.S will soon receive an FPIES Fact Sheet developed by IAFFPE’s Medical Advisory Board (MAB) and distributed by the American Academy of Pediatrics Section on Allergy and Immunology. This is a monumental step in our ongoing effort to educate all frontline providers about FPIES and ultimately reduce the amount of time that patients go without diagnosis.
  • Over the past year, IAFFPE has also been working with the CDC’s National Center for Health Statistics to create a unique ICD-10-CM diagnosis code for FPIES. Any day now, we expect to receive exciting news approving this code. Requests for ICD-10 codes are not typically initiated by patient advocacy organizations, but in keeping with our progressive mission to create awareness of FPIES, IAFFPE has been at the forefront of this request. I can’t emphasize enough how important this will be for our community on so many levels: billing, insurance and medical records, disease management, treatment advances, research, national statistics, and the list goes on.

2. Research Holds the Answers
Research is the most valuable commodity available to the FPIES community, and IAFFPE is the only organization actively funding FPIES research. As more studies are conducted, more data can be collected, leading to improved methods of diagnosing and treating FPIES. It is our greatest hope that research will lead us to the discovery of the primary cause for FPIES, followed by a cure.

As part of our research efforts, our Medical Advisory Board has developed four surveys to measure global FPIES awareness among key medical professionals (pediatricians, allergists, GI, dietitians). The results will help us understand how to better educate physicians in the diagnosis and management of FPIES. This will also help identify our research priorities so that every dollar donated is spent wisely and in the best interest of FPIES families.

In addition, we are expanding our development efforts in 2013 to fund new research at major medical centers that will help to identify the root cause of FPIES while also advancing treatment options.

3. Key Partnerships

Did you know that IAFFPE is the official FPIES organization affiliated with the National Organization for Rare Disorders (NORD)? We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).

In fact, IAFFPE has a very exciting opportunity to be profiled in The Journal of Allergy and Clinical Immunology: In Practice, a journal targeting clinical practices. We’ll be featured in the July issue on Gastrointestinal Allergy, putting a spotlight on the work we do for FPIES patients and further raising awareness among medical professionals.

4. Your Donation Makes the Difference
IAFFPE exists to help FPIES patients and mobilize a national community that deserves recognition, support and answers. From our esteemed Medical Advisory Board to our dedicated team of parents, we are an organization of volunteers. IAFFPE does not receive any government funding. We rely on donations from the heart of our community–people like you–to accomplish these goals.

In addition to the efforts already cited, IAFFPE brings about enduring, profound change by:

  • Providing free support, information, and referral services to FPIES patients and families. In addition to our growing library of online resources, we respond to hundreds of emails and messages via social media so that patients and families know that they’re not alone.
  • Igniting awareness of FPIES nationally and internationally with media coverage from ABCNews, Good Morning America, and The Ricki Lake Show. Our successful campaigns for Rare Disease Day and Food Allergy Awareness Week have spread the word about FPIES while also reinforcing our emerging place in the rare disease and food allergy communities.
  • Organizing the first national FPIES Education Conference scheduled for October 20th in Philadelphia. This is a unique opportunity to bring our community together and hear from expert speakers on a wide spectrum of FPIES-related topics.

As I write this post, it becomes clear how interconnected each of these points are. Initiatives. Research. Partnerships. Your Generosity. They are all fueled by each other; they are all dependent on each other. And they are also what set IAFFPE apart.

This is an exciting time for the FPIES community, and we appreciate your enthusiasm and support in helping IAFFPE make the world a safer, happier place for those living with FPIES.

FPIES and Parental Stress

FPIES and Parental StressAt this year’s AAAAI Annual Meeting, we were encouraged to see so much focus on the parental stress and management of having a child with severe food allergies. More and more, physicians are looking at the consequences of this stress and how to best support families in their day-to-day struggles.

“Family Management of Children’s Food Allergies: Patterns of Food Avoidance and Reaction Response Preparation in Relation to Anxiety” was a featured poster at the conference and also appeared in the Journal of Allergy and Clinical Immunology. Read more here: http://www.jacionline.org/article/S0091-6749%2812%2903021-7/fulltext.

Every day, we’re in touch with families who live with FPIES; as resilient as they are, managing the condition can be difficult and stressful. Medical professionals are becoming more aware of the impact that food allergies have on both patients and their families. But even those who live with a condition like FPIES every day need to be reminded of the extra level of stress those allergies can carry and the impact that stress can have.

Food allergies bring with them a variety of emotions: feelings of fear and constant vigilance, a sense of being overwhelmed or always at risk. New anxieties may arise as parents go through the different stages of a child’s development. Adding to the stress, food allergies impact the daily activities that most families take for granted: social and school activities, meal preparation, relationships with families and friends, etc.

Given the emotions and adjustments that families make to live with FPIES, it’s not surprising that caregivers feel the stress or have less time for themselves. It’s not surprising that a family living with FPIES can also be impacted by the financial burden, whether it’s lost work hours, medical expenses, or the cost of special foods.

We all need to take the time to check in with ourselves and our families. Maybe FPIES is causing you significant stress; it can be helpful to discuss these feelings with a trusted family member, friend or medical professional or connect with other FPIES families in your region or online. For others, the stress builds slowly; FPIES is such a part of our day-to-day reality that we can lose track of what a huge impact it has on our lives.

Here are a few more tips to manage the fear and anxiety we often feel as parents:

Teach your child about their food allergies from an early age. The earlier they learn, the more empowered they will become. If you have an older child with FPIES, have them grocery shop and read labels with you, cook with you, or ask questions at a restaurant.

Talk openly with your child about their fears (and yours) and discuss ways to cope with these situations. For example: “I understand you’re a little nervous about starting preschool. I’m a little nervous too, and that’s okay. Let’s talk about how we can both be prepared ahead of time. Then let’s talk about how much fun you’re going to have there!”)

The importance of self-care cannot be overstated. Parents who take good care of themselves take better care of their children. Take the time to do the things that make you feel good: read a magazine, eat well, exercise. You’ll be more relaxed and better able to manage whatever the day brings.

Lastly, pay attention to the present moment. Sometimes we are so distracted by our thoughts of food trials and doctor appointments that we miss out on the present moment. Don’t miss out on the simple joy of reading a book together or hearing your child laugh.