10 Simple Fundraising Ideas to Fight FPIES

31in31Our $31,000 in 31 Days campaign to fight FPIES is in full swing! Help the International FPIES Association (I-FPIES) continue to advance this condition and support FPIES patients and families throughout the year.

Looking for easy, creative ways to get involved? We’ve got you covered with our top 10 list:

1. LET THE PIES FLY FOR FPIES: Invite friends, family members, and co-workers to join you in a “Pie in the Face for FPIES” event. Participants make a donation to deliver a pie in the face to the person of their choosing. Get 20 participants to donate $25 each, and you’ve just raised $500!

For a crowd, use shaving cream or whipped cream in a pie tin instead of buying or baking pies. FPIES families can get creative with their pies, using everything from cotton balls to pureed versions of their children's safe foods!

2. ONLINE FUNDRAISING: Sign up online and raise money the easy way at https://fightfpies.causevox.com/. Once you register, it’s easy to share on all your social media sites to ask friends and family to contribute. Make sure to personalize your page, share your story, and let others know why raising funds is so important to you!

3. DIME-A-HUNDRED: Place an empty 16oz water bottle on your desk or at the front desk of your office and ask your coworker to empty their pockets of dimes and drop them in. One full bottle of dimes is equivalent to $100!  Decorate the bottle with the picture/story of your FPIES hero.

4. GARAGE SALE: Now is the perfect time for spring cleaning! Holding a garage sale to clean you’re your closets and bring in much-needed funds. Create a sign to let everyone know all money raised is being donated to the International FPIES Association and be sure to include a photo of your FPIES hero.

5. MATCHING GIFTS: Ask your human resources or personnel department if your employer matches funds. If so, get the form and fill it out-–your donations could be doubled or more!

6. DIFFERENT KIND OF BAKE SALE: Hold a “bake sale” that features only your child’s safe foods, with all proceeds going to I-FPIES. It can send a powerful message about the challenges of a limited diet.

7. THONS! Cut-a-thon (hair salon), Mow-a-thon, Car-Wash-a-thon. You name it! Create a fun sign that attracts attention and ask for donations in lieu of payment.

8. 10 DAYS OF $10: For 10 days, ask one person each day for a $10. At the end of the 10 days, you will have raised $100!

dumdum9. CANDY JANE: Dum Dum Lollipops are a favorite of many FPIES families. Get creative with a fun way to display the lollipops (bouquet, treasure chest, etc.) and tell your story. Ask coworkers and neighbors to exchange a donation for a treat.

10. BEST/WORST TIE for FPIES: For the cost of a donation, coworkers can enter a best or worst tie competition to raise funds for I-FPIES. Offer a prize and have the entire office vote at lunchtime. For extra fun, turn it into a small fashion show.

These are just a few small ways YOU can make a big difference in the fight against FPIES. Thank you for supporting the International FPIES Association and patients and families living with FPIES. Make a Donation Today!

4 Easy Things You Can Do NOW for National FPIES Awareness Day!

National FPIES Awareness Day is Thursday, May 4th, and there are plenty of simple, proactive ways that you can make a difference.

31in311. Make an Impact
I-FPIES is thrilled to launch our $31,000 in 31 Days campaign to fight FPIES! Proceeds support an exciting multi-center research study into the genetics and pathophysiology of FPIES, as well as important initiatives that are educating the medical community and supporting patients and families living with this condition.

Help us reach our goal by donating to the International FPIES Association by May 31st.  We make it easy and secure to set up your own fundraising page, share your story, and ask friends, family, and coworkers to contribute. Get started today and stay tuned for more creative ways you can get involved in fighting FPIES!

2. Go Teal and Gray
FPIESFBPROFILE2017Download and display the official FPIES Awareness Ribbon (shown right) as your social media profile picture. The FPIES ribbon is a twist on the solid teal Food Allergy Awareness Ribbon. The FPIES ribbon has a touch of gray to symbolize how much is unknown about this "other" form of food allergy affecting the gastrointestinal system.

3. Educate Yourself and Others
Take some time to read up on the symptoms of Food Protein-Induced Enterocolitis Syndrome, and choose three facts to share with your Facebook friends by posting them as a status update on May 4th. You can also download and share our educational graphics debunking common FPIES myths:

Myth #1: "It's Just the Stomach Flu"

Myth #2: "it's Impossible to Be Allergic to Rice"

Myth #3: "Only Young Children Can Have FPIES"

4. Share the New FPIES Guidelines with Your Medical Team
National FPIES Awareness Day is the perfect time to ensure that your medical providers know about the recently released international consensus guidelines for FPIES. Download and share these detailed guidelines for the diagnosis and management of FPIES, developed by I-FPIES in collaboration with leading experts on FPIES from around the world.

Thank YOU for making the first National FPIES Awareness Day a powerful, effective platform for spreading the word about FPIES! Your voice matters and your support impacts the lives of patients with FPIES and their families.

I-FPIES Names Four New Members to Medical Advisory Board

The International FPIES Association (I-FPIES) is proud to name four additional members to our Medical Advisory Board (MAB), which is comprised of the world’s leading experts on Food Protein-Induced Enterocolitis Syndrome (FPIES).

Our 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, we’re thrilled to announce four new MAB members:

Andrew Bird 191x288J. Andrew Bird, MD

Assistant Professor of Pediatrics and Internal Medicine
UT Southwestern Medical Center
Children’s Medical Center Dallas
Dallas, TX

 

cianferoniAntonella Cianferoni, MD, PhD

Assistant Professor of Pediatrics
Children's Hospital of Philadelphia
Philadelphia, PA

 

georgeGeorge N. Konstantinou, MD, PhD, MSc

Department of Allergy and Clinical Immunology
424 General Military Training Hospital, Thessaloniki, Greece
Division of Allergy and Immunology, Jaffe Food Allergy Institute
Icahn School of Medicine at Mount Sinai
New York, NY

stephanie leonard mdStephanie Leonard, MD

Assistant Clinical Professor
Rady Children’s Hospital
Division of Allergy and Immunology
University of California, San Diego
San Diego, CA

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

First International Consensus Guidelines Released for FPIES

The International FPIES Association (I-FPIES) is excited to announce the publication of the “International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome.” An executive summary has been published in The Journal of Allergy and Clinical Immunology (JACI), and the full document is available open access online.

DownloadButtonThese FPIES guidelines were designed to improve quality and consistency of care for FPIES patients by offering clinicians recommendations for disease diagnosis and management. The guidelines address the following topics: Definition and Clinical Manifestations, Epidemiology, Diagnosis, Gastrointestinal Manifestations, Acute Management, Nutritional Management, Natural History, and Future Needs.

The guidelines are the result of a three-year global collaboration led by the International FPIES Association and included the input of more than forty leading FPIES experts. Anna Nowak-Wegrzyn, MD, and Matt Greenhawt, MD, co-chaired the guidelines committee that led the effort to develop clinical questions about the diagnosis and management of FPIES. After extensive literature review and data extraction, draft recommendations were considered by an international expert panel that reached consensus on thirty recommendations.

I-FPIES Founder and President Fallon Schultz says, “Dozens of FPIES experts from across the globe volunteered their time and efforts to make the I-FPIES guidelines initiative a reality. These first ever, standard of care guidelines for FPIES will fill a significant clinical gap. And beyond that, the guidelines will highlight opportunities for future research, inform health care coverage policy, and lead to needed educational programs.”

The “International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome” were submitted to and approved by American Academy of Allergy, Asthma, and Immunology (AAAAI) as a Workgroup Report of the Adverse Reactions to Foods Committee.

The International FPIES Association has a global dissemination plan in place for the guidelines that includes outreach to various clinician groups, including allergists, gastroenterologists, pediatricians, ER physicians, allied health professionals, nurses, dietitians, as well as parents and relevant advocacy groups. There will also be a national outreach plan to reach every allergist in the United States.

For international outreach, the I-FPIES medical advisors and executive board will be traveling to major society meetings to educate providers worldwide, and the guidelines will be made available in multiple languages through the organization's partnerships.

To find out more about the FPIES guidelines, visit the I-FPIES website: http://fpies.org/index.php/about-fpies/fpies-guidelines

FPIES is a non-IgE gastrointestinal food allergy that manifests as delayed, profuse vomiting, often with diarrhea, acute dehydration, and lethargy. The most common triggers are milk and soy, but any food, even those thought to be hypoallergenic (e.g., rice and oat), can cause an FPIES reaction. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are delayed and usually begin two hours after ingestion of the trigger food. In some cases, the child will have such an extreme reaction that they go into shock and need to be admitted to the ER for immediate treatment with intravenous fluids.

There is currently no cure or standardized treatment for FPIES. Unlike common food allergies, standard skin testing and blood testing for specific IgE allergies are routinely negative in FPIES patients. Early diagnosis and treatment are important for preventing FPIES reactions; however, reaching a diagnosis is often delayed.

About I-FPIES

The International FPIES Association (I-FPIES) is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for patients and families affected by Food Protein-Induced Enterocolitis Syndrome (FPIES). I-FPIES is a worldwide leader in FPIES awareness and the issues surrounding this condition. We seek to increase awareness by providing educational resources, support services, advocacy, and the development of groundbreaking research through our partnership with the medical community. For more information, please visit www.fpies.org or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..

Let's Raise Feeding Tube Awareness!

ribbon 1

Love a tubie? Deciding whether tube feeding could be right for your FPIES child? This week, we’re honoring Feeding Tube Awareness Week®--a time to promote the positive benefits of tube feeding as a medical intervention that saves and enhances lives! The theme of the week in 2017 is “Fueling Life” because feeding tubes make it possible for those unable to eat or drink enough on their own to get the nutrition and hydration they need for life.

3561567The International FPIES Association (I-FPIES) is proud to be among the organizations participating in and supporting Feeding Tube Awareness Week®. The Feeding Tube Awareness Foundation is spreading the word about the life-changing impact of nutritional support. This week is also dedicated to raising awareness in the general public about the medical reasons children are tube fed, the day-to-day life of a tube-fed child, and connecting families in the tube-feeding community.

Below are some valuable links to mark Feeding Tube Awareness Week®:

The decision to tube feed can be a difficult one. This article from the Feeding Tube Awareness Foundation talks about making the choice, while this link provides a helpful overview about tube feeding. The Feeding Tube Awareness Foundation also provides this list of essential tube feeding resources for parents and caregivers to help in a child’s care.

If you love a tubie, we encourage you to raise awareness by changing your profile picture on social media to the image on the right. This week is also a great time to share your story and experience with tube feeding. Let's get the word out!

 

 

Make A Difference

I-FPIES relies on the generosity of our supporters.

Donate today and let's change the future of FPIES.

Donate Now

Could It Be FPIES?

Learn from the experts about symptoms, diagnosis and treatment.

Read More

FPIES Diagnosis? We Can Help.

Start here for resources and support to navigate the journey.

Read More