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!

Notes from FPIES Dads, Part 2

Notes from FPIES DadsLast Friday, we shared a Father’s Day post with insights from some of the dedicated FPIES dads we’ve met at IAFFPE. Soon after, we received a note from a dad with a valuable perspective. Dan is looking at FPIES from the rear-view mirror, as his daughter has recently outgrown FPIES. Here’s what he wants dads and moms managing FPIES to know:

What advice do you have for dads who are new to FPIES?

1. Trust Mom’s Intuition: If it had been up to me, Bella would have bulldozed through these issues. I would have pushed her and pushed her some more. I know now that if it weren’t for my wife’s 6th sense and strong voice, her persistence, patience and concern, Bella may have ended up much worst. My wife said something was wrong when breastfeeding. I kept pushing her. We stopped at a month. She was concerned about food allergies. I doubted her. The reality is that her fear was a healthy fear and something I’m learning to value.

2. Patience: Having a child with FPIES takes a ton of patience. You’ll need to plan everything way in advance—outings, travel, holidays, appointments, etc. Life is not normal. It’s really hard to understand at first but your child has different needs than most children, and those needs revolve around food.

3. Stress: No doubt, you and your child’s mother will have issues. You’re dealing with something that many other parents won’t have to. You won’t agree on everything, but make sure those lines of communication stay open.

4. Educate: Be prepared to teach doctors (and everyone else who matters in your life) about FPIES. Know that you’ll soon become a nutrition expert, which might help you lose 30 pounds (as it did for me!).

5. Hope: Though it can seem hopeless at times, know that for most there is an end to FPIES. To get through it, use common sense. Avoid triggers and read about nutrition that promotes healing of the gut. Hang in there. Stay by your woman’s side and remember that if you can make it through this, then you’ll have more endurance to make it through most anything…together.

What do you want FPIES moms to know?

It’s tough on dads too. Most moms have certain expectations about how they are going to feel with their children and what it means to be a “good mom.” I imagine most moms of FPIES children never expected the early years would be filled with such fear and uncertainty. Like many men, I just want my wife to feel like she has it all. Both of us had a vision of parenthood that was changed by the realities of FPIES.

Even if your child has only a few safe foods, give them as many choices as you can so they feel a sense of control. When our daughter was a toddler and had only a handful of safe foods, we did our best to give her variety within those foods by mixing up the textures and preparation.

As your child gets older, it’s important to still make prudent decisions but also remember that at some point most children with FPIES outgrow it. The only way to know is to introduce the foods that scare us most. Though it’s understood you never want to do anything to harm your child, it’s important to find a balance. Fear is normal and healthy; however, don’t let it rule you.

Thanks to Dan for sharing his insights!

9 Easy Things You Can Do for Food Allergy Awareness Week!

It’s Food Allergy Awareness Week, the perfect opportunity for each of us to raise awareness about Food Protein-Induced Enterocolitis Syndrome (FPIES). Join IAFFPE in spreading the word about FPIES and making the unknown known. Here are 9 simple things you can do right now:

FPIES Awareness Ribbon1. Use our FPIES Awareness Ribbon to the right as a profile picture on your social network.

2. Help your child color their own FPIES Awareness Coloring Sheet. Take a photo and share it with friends and family on Facebook or Twitter.

3. Share a photo in our Faces of FPIES gallery on Facebook. Let your network see all those beautiful faces we’re fighting for!

4. Join our email list to receive important updates from IAFFPE.

5. Organize a fundraiser to help raise tax deductible funding for IAFFPE. We’ve got tools and ideas to get you started with this rewarding process

Faces of FPIES FAAW 20146. You and your loved ones can wear their support for the FPIES community by purchasing FPIES Awareness Pins and Bracelets.

7. Watch one of our educational videos and share it with your community to raise awareness.

8. Read, learn from, and share NEW articles from the largest single publication ever on FPIES.

9. Make a donation to IAFFPE to support the work we do to improve the lives of patients and families living with FPIES.

Stay tuned to social media all week as IAFFPE honors Food Allergy Awareness Week, and be sure to share how you’re getting the word out about FPIES this week!

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.

Amazing Strides from Team FPIES!

Fighting FPIES FundraiserFighting FPIES Fundraiser fund1 Fund3Congrats to Team FPIES for its wildly successful fundraising effort at the Berkeley Heights 5K this past Sunday. The Reff family and friends raised over $5,500 to benefit IAFFPE and those living with FPIES!

The group got the word out about FPIES to a crowd of more than 500 walkers and runners. The 30 members of Team FPIES wore custom “Fighting FPIES” shirts — everyone wanted to know “What is FPIES?” The team also hosted a booth to distribute IAFFPE brochures and sell FPIES awareness bracelets.

Our thanks go to event organizer and FPIES mom Allison Reff. After the event, Allision shared, “I couldn’t be happier to give back to IAFFPE. You helped my family get through a very difficult time and offered us such encouragement and hope. We are hoping to make this an annual fundraiser. It was such a heart-warming experience.”

Inspired by Team FPIES? Fundraising is a powerful way to make an impact in the fight against FPIES. To learn more about ways to help our mission through fundraising, click here. With these funds, IAFFPE will continue to affect real change in our FPIES community. To see a great example of online fundraising, visit the Team FPIES site on Crowdrise.

* Please note that IAFFPE is not affiliated with any other FPIES organization. Our fundraising dollars go directly toward research and impactful initiatives, with all overhead costs donated or supplied by the Executive Board.