New Growth and Leadership for IAFFPE’s Medical Advisory Board

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

The International Association for Food Protein Enterocolitis (IAFFPE) is proud to name a new chair and three additional members to our Medical Advisory Board (MAB), which is comprised of the world’s leading experts on Food Protein-Induced Enterocolitis Syndrome (FPIES).

Dr. Anna Nowak-Wegrzyn will take on the role of MAB Chair. She is currently an Associate Professor of Pediatric Allergy and Immunology at Mt. Sinai Medical Center in New York, NY. The position holds a three-year term in the organization that rotates within different institutions.

Dr. Nowak-Wegrzyn shares the organization’s global vision and has an innovative agenda for her term. She has already made significant contributions to our community through research and clinical practice, and we are very excited about the future of IAFFPE under her guidance.

We also thank outgoing Chair Dr. Jonathan Spergel for his remarkable leadership and dedication over the past three years; we are thrilled he will remain a key part of our Medical Advisory Board.

IAFFPE’s Medical Advisory Board is composed of allergists, immunologists, gastroenterologists and nutritionists who share a common purpose to create global collaboration for the diagnosis, treatment, management and advancement of FPIES. The MAB advises the organization on FPIES education, awareness and advocacy initiatives while also providing medical review of our web content and educational materials.

As part of our effort to advance awareness and understanding of FPIES at an international level, we’re also thrilled to announce three new MAB members:

  • Dr. Jin-Bok Hwang
    Department of Pediatrics, Keimyung University School of Medicine, Daegu, Korea
  • Dr. Antonella Muraro
    Pediatric Allergy, Paediatric Department of the University Hospital of Padua, Italy
  • Dr. Ichiro Nomura
    Department of Allergy and Immunology, National Research Center for Child Health and Development, Tokyo, Japan

These additional members reflect the global nature of our research and initiatives. We are privileged and excited to partner with such an accomplished group of physicians, researchers and thought leaders!

Maya Lives Confidently with FPIES!

We’re thrilled to present a video snapshot on life with FPIES from our friend Maya! Some of you know Maya from our FPIES Education Conference, where her confidence and positive message provided one of the most uplifting moments of the day. She is also a member of IAFFPE’s new Teen Council, which focuses on providing a voice and empowering tools for older children with FPIES. To learn more about Maya, check out her “FPIES Champion” profile in our FoodPrints newsletter (see page 9).

This video launches IAFFPE’s exciting new initiative to connect with older children and adults who have FPIES and include them in the dialogue. Stay tuned for more videos, guest blog posts and resources for this important segment of our community!

Help Find Michaela Wells!

Help Find Michaela Wells

UPDATE: Michaela Wells has been found safe! Thank you to everyone in our community for getting the word out and helping to find Michaela.

The search continues for Michaela Wells, IAFFPE’s Educational Ambassador. In the past 24 hours, there has been increasing coverage of the story in local, national, and international media, but little new information.

Thanks to your efforts, our Facebook post has been viewed by 20,000+ people and shared more than 400 times. Please continue to get the word out–and keep Michaela and her family in your thoughts!

Michaela is very special to IAFFPE, and we are heartsick at the news of her disappearance. We wanted to take a moment to highlight the work she has been doing in our FPIES community by sharing this blog post announcing her role as IAFFPE Education Ambassador. Please take a moment to learn about this inspiring young woman. Let’s bring her home!

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Michaela Wells, IAFFPE Education AmbassadorIAFFPE is proud to announce Michaela Wells as our first Education Ambassador. Our Education Ambassador program gives siblings and older children with FPIES the opportunity to raise awareness, share their stories and make a difference in our community.

15-year-old Michaela is proud to promote FPIES as her platform during her reign as Miss Nebraska Teen through the USA National Miss Scholarship Organization. It’s a cause dear to her family: her three-year-old brother Kainen has FPIES.

Like many FPIES families, the road to Kainen’s Michaela's Brother Kainen Has FPIESdiagnosis was long and filled with worry and confusion. His struggles with food began shortly after birth and continued through multiple hospitalizations until he was finally diagnosed with FPIES at 17 months old.

These days, most of Kainen’s diet consists of medical formula (Elecare Jr.) and his favorite leafy greens, berries, and salmon. He is FPIES to dairy, soy, eggs, beef, poultry, legumes, and brown rice.Today, Kainen is seen by the team at the Food Hypersensitivity Clinic at Omaha Children’s Hospital and Specialty Center in Omaha, Nebraska.

Michaela is committed to raising FPIES awareness and sharing her family’s story in the hope of preventing other children from going undiagnosed. She also brings an important message that life with FPIES is a family affair, and siblings play a crucial role. She wants children and siblings living with FPIES to know that communication and knowledge are empowering tools. After all, siblings and older children with FPIES can play an important role in educating teachers, other family members, friends, and the public about this condition. Miss Nebraska Teen at National Nite Out Baconfest

As she prepares for her trip to the USA National Miss Pageant in June, she’s sharing her activities and platform here. Everything she raises beyond funding her trip to Nationals will be donated to IAFFPE.

Since May, Michaela has been hosting a booth at a local farmer’s market with FPIES-friendly baked goods that are free of dairy, soy and eggs. She also has a backdrop display of the products her family uses in place of Kainen’s trigger foods, as well as information from IAFFPE about FPIES and how it affects her brother and other kids like him. On Labor Day, Michaela hosted a “Queen Meet and Greet” table at the Nebraska State Fair, where she signed autographs, spoke about FPIES, and handed out educational materials to raise awareness.

In addition to attending the FPIES Education Conference in October, she’ll attend a VIP Reception in the Atlanta for her National Dress Sponsor, Bravura, where she’ll spread the word about FPIES with fellow guests who are always on the lookout for a worthy cause to support. In November, she’ll have an informational table on FPIES at Worldfest with kid-friendly activities and a short presentation onstage to address the crowds. Michaela is also in the process of starting up a benefit pageant entitled “Royalty for FPIES” to benefit IAFFPE and families living with FPIES.

As our Education Ambassador, Michaela looks forward to sharing her message of hope, education, and empowerment with all FPIES families! We are so impressed by this busy, accomplished young lady and thankful for the work she is doing on behalf of our community.

AllergyHome Shines a Light on FPIES and IAFFPE

imageOur own Fallon Schultz recently had the pleasure of writing a guest blog post for AllergyHome about FPIES and the work we do.

If you haven’t heard of AllergyHome, it’s an essential site for anyone caring for a child with food allergies. AllergyHome specializes in developing practical teaching tools that benefit our communities. One of our favorite resources is their comprehensive guide Living Confidently with Food Allergy. AllergyHome has also designed an array of valuable tools for managing food allergy at school.

IAFFPE's Fallon SchultzWe are very excited to help kick off AllergyHome’s guest blog series highlighting organizations that work with and support the food allergy community. As guest blogger, IAFFPE Founder and Chair Fallon Schultz offers a look at FPIES, a rare non-IgE mediated food allergy that affects her son, and discusses some of IAFFPE’s key initiatives to increase awareness and improve the lives of patients and families living with FPIES. Thank you to AllergyHome for this opportunity!

Meet IAFFPE’s Education Ambassador Michaela Wells!

Michaela Wells, IAFFPE Education AmbassadorIAFFPE is proud to announce Michaela Wells as our first Education Ambassador. Our Education Ambassador program gives siblings and older children with FPIES the opportunity to raise awareness, share their stories and make a difference in our community. Each Ambassador will share their journey through video and blog posts. We’re thrilled to have Michaela attend our FPIES Education Conference next month and report back on her experience!

15-year-old Michaela is proud to promote FPIES as her platform during her reign as Miss Nebraska Teen through the USA National Miss Scholarship Organization. It’s a cause dear to her family: her three-year-old brother Kainen has FPIES.

Like many FPIES families, the road to Kainen’s Michaela's Brother Kainen Has FPIESdiagnosis was long and filled with worry and confusion. His struggles with food began shortly after birth and continued through multiple hospitalizations until he was finally diagnosed with FPIES at 17 months old.  These days, most of Kainen’s diet consists of medical formula (Elecare Jr.) and his favorite leafy greens, berries, and salmon. He is FPIES to dairy, soy, eggs, beef, poultry, legumes, and brown rice. Today, Kainen is seen by the team at the Food Hypersensitivity Clinic at Omaha Children’s Hospital and Specialty Center in Omaha, Nebraska.

Michaela is committed to raising FPIES awareness and sharing her family’s story in the hope of preventing other children from going undiagnosed. She also brings an important message that life with FPIES is a family affair, and siblings play a crucial role.

She wants children and siblings living with FPIES to know that communication and knowledge are empowering tools. After all, siblings and older children with FPIES can play an important role in educating teachers, other family members, friends, and the public about this condition.

Miss Nebraska Teen at National Nite Out BaconfestAs she prepares for her trip to the USA National Miss Pageant in June, she’s sharing her activities and platform here. Everything she raises beyond funding her trip to Nationals will be donated to IAFFPE.

Since May, Michaela has been hosting a booth at a local farmer’s market with FPIES-friendly baked goods that are free of dairy, soy and eggs. She also has a backdrop display of the products her family uses in place of Kainen’s trigger foods, as well as information from IAFFPE about FPIES and how it affects her brother and other kids like him. On Labor Day, Michaela hosted a “Queen Meet and Greet” table at the Nebraska State Fair, where she signed autographs, spoke about FPIES, and handed out educational materials to raise awareness.

In addition to attending the FPIES Education Conference in October, she’ll attend a VIP Reception in the Atlanta for her National Dress Sponsor, Bravura, where she’ll spread the word about FPIES with fellow guests who are always on the lookout for a worthy cause to support. In November, she’ll have an informational table on FPIES at Worldfest with kid-friendly activities and a short presentation onstage to address the crowds. Michaela is also in the process of starting up a benefit pageant entitled “Royalty for FPIES” to benefit IAFFPE and families living with FPIES.

As our Education Ambassador, Michaela looks forward to sharing her message of hope, education, and empowerment with all FPIES families! We are so impressed by this busy, accomplished young lady and thankful for the work she is doing on behalf of our community.

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.

A Brighter Future: The New ICD-10 Code for FPIES

FPIES ICD-10 CodeIt’s been a momentous week already for the FPIES community! On the heels of a national story about FPIES on Good Morning America, IAFFPE received word: FPIES finally has an official diagnosis code: K52.21.

Securing the ICD-10 code was an ambitious, year-long initiative for IAFFPE. We were warned how difficult it would be to get a new code passed. We were told that it is even more difficult for an advocacy group to pursue such a code successfully.

Together, you and IAFFPE wrote a key page in the history for FPIES. Every letter or e-mail sent on behalf of a child with FPIES made an impact. And because of our collective voice, families who walk the same road in the future will be less likely to suffer from delayed diagnosis or a lack of treatment opportunities. Knowledge, awareness, research, funding—we are only beginning to know the reach this code will have.

For more details about the ICD-10-CM code—including what it means and when it will be implemented—please read this press release. As it discusses, the ICD-10-CM code will not take effect right away due to the transition from the current ICD-9 coding system to the new ICD-10 coding system.

Finally, the press release includes quotes from Dr. Anna Nowak-Wegrzyn and Dr. Jonathan Spergel, two champions of this cause to whom we owe so much.

Together, we are making the unknown known (and we are not done yet). It’s not too late to become part of the movement and affect real change. From your donations to your fundraising efforts to your time and your talents, our community is coming together in amazing ways.