Wednesday, October 22, 2014

Trick-or-Treating with Food Allergies

Last year we shared some of our favorite tips for keeping your children safe, and included, during the Halloween festivities in our Allergy Friendly Halloween post. Be sure to check it out!

This year, many families are participating in the Teal Pumpkin Project, brought to us from FARE. The organization states: "This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available. Learn more:http://www.foodallergy.org/teal-pumpkin-project
We encourage you to visit FARE’s website to participate in this great project!


Before you head out this year, we wanted to share something one of our families made to use in their neighborhood-- they shared with us to share with you! Print these out (there is one for a boy and one for a girl) and then bring your safe treat (food or non-food) with this note to your neighbors house before you head out trick-or-treating with your little one. This lets everyone know ahead of time what your trick- or-treater is dressed as and what safe treat (provided by you!) that the neighbor can give to them!


For Boy

For Girl


Tuesday, October 14, 2014

The Proclamation for Global FPIES Day

Today, on Global FPIES Day, at The FPIES Foundation, we are proud announce the official proclamation for the day.

The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community. Collaboration among medical professionals, families and affected patients, and global partners allows for furthering awareness, promoting advocacy, and fueling future research, worldwide.

Food Protein-Induced Enterocolitis Syndrome, FPIES, is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

For individuals affected by FPIES, significant delay in diagnosis can be common, which may lead to increased acute episodes and compromised quality of life. Lack of conclusive diagnostic testing and diagnosis management strategies can impact the standard of care received by these individuals. Lack of awareness among medical professionals can affect appropriate diagnosis and follow-up care. In honor of Global FPIES Day, we aim to raise greater awareness to this often misunderstood diagnosis. At The FPIES Foundation, we not only recognize the need for research to help future children and their families, but we also recognize the need to help our families and medical professionals now by providing education, advocacy and support resources, online and in our global community.

On Global FPIES Day, we continue to further awareness through providing resources, such as printable packets for medical provider, school/caregiver, and patient education, respectively. Flyers and printable informational materials are provided for promoting community understanding. Interactive activities, such as creating “Be the Voice” social media frames and taking part in “Find Your Fourteen,” foster advocacy among patients, families, medical providers and our partners. The website, www.fpiesday.com, provides additional resources and tools to further the mission of Global FPIES Day.

Throughout the year, we at The FPIES Foundation uphold the ideals and promote the mission of Global FPIES Day. We continue to invest our resources in outreach worldwide, for medical providers and families alike-- a provider database, bi-lingual resources, printable forms and documents, and other tools to empower our community to support individuals affected by FPIES. We expand our global partnerships through project collaborations and resource sharing. Our FPIES Global Patient Registry provides information on current trends reported by FPIES families and is made available to researchers in the field, fueling future novel scientific endeavors. Our dynamic and diverse medical advisory board provides multidisciplinary support to our ongoing initiatives. 

Imagine parents holding their sick child in the dark night, scared and alone, not knowing where to turn for help. Envision the light that knowledge and the insight of an informed global community can bring to these dark nights, to these children and their families. We invite families, medical providers and partners worldwide to strive toward improved patient and provider education, community support and advocacy for all affected individuals and their families.

NOW, THEREFORE, we, The FPIES Foundation, a nationally recognized 501c3 non-profit organization and sponsor of this day, do hereby proclaim October 14, 2014, as Global FPIES Day. We invite the global community at large to observe this day with programs, ceremonies, resources and activities that promote education, support, advocacy and research for FPIES (Food Protein-Induced Enterocolitis Syndrome) worldwide.

Thursday, October 9, 2014

Global FPIES Day 2014!

The FPIES Foundation invites everyone to participate in the first official celebration year of Global FPIES Day on October 14th!

FPIES (Food Protein-Induced Enterocolitis Syndrome) is a rare type of food allergy and the need for awareness, education and support around the globe is great.  Newest MAB member, from Spain, Sergio Negre Policarpo, MD, PhD shares, “Our aim is to improve the diagnosis and treatment of this disease by avoiding wasted time and misdiagnosis. Similarly, our desire is to bring knowledge of this entity to the general population and expand their knowledge in Spanish-speaking territories. 

Just as Dr. Powell empowered medical providers with tools for the FPIES diagnostic criteria, The FPIES Foundation will continue providing tools for providers, patients and families. Over the years, we pursued the campaigns such as "Awareness is Action," "FPIES: Now I Know" and "FPIES: Be the Voice"-- our aim for Global FPIES Day remains consistent with these ongoing initiatives: to educate, support and empower through global outreach, multi-faceted resources, and innovative research.

We are proud to launch the webpage (www.fpiesday.com) dedicated to everything you need to know for Global FPIES Day. This webpage is your one stop for learning and sharing information about FPIES, ways of establishing awareness in your community, being an advocate, connecting to research and so much more!

The highlights of the webpage are the simple ways you can be part of the day: wearing your awareness, sharing your awareness with a ribbon frame, building awareness with Foundation flyers, printing awareness packets for providers, patients, and families, participating in "fourteen for FPIES", and joining the fun with Sarah's FPIES Clubhouse.

In honor of Global FPIES Day, we aim to raise greater awareness to this often misunderstood diagnosis. Please visit www.fpiesday.com for ways to get involved or contact The FPIES Foundation at contact@thefpiesfoundation.org for more ways that you can help!