The FPIES Foundation Exhibits at NASPGHAN

In October, The FPIES Foundation was honored to attend the Annual North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) meeting.

NASPGHAN brings pediatric training and advancements to this yearly conference. We had the privilege of meeting and speaking with several hundred compassionate Pediatric Gastroenterologist Practitioners, Nurses, and Nutrition professionals, while providing them with information on Food Protein-Induced Enterocolitis Syndrome, as well as resources from the Foundation at our booth.   

A welcome reception by Dr.Gold, Pediatric Gastroenterologist at Children's Center for Digestive Healthcare in Atlanta and member of The FPIES Foundation Medical Advisory Board (MAB), opened this three day event on a Thursday evening. The welcome was immediately followed by the opening of the exhibit hall where providers presented their posters and visited exhibits, such as The FPIES Foundation's booth!

We were encouraged to meet a number of practitioners who are aware of FPIES; most knew of it because they had/have a patient diagnosed with it. So many of the practitioners we spoke with echoed our belief that more research is needed for this complex allergic syndrome. These compassionate physicians and health professionals shared their sincere gratitude for the resources and support that the Foundation provides, empowering families and providers. 

We were so happy to have Melissa and Heather, parents of children living with FPIES, volunteer with us to help at the booth! Connecting with other families is always such a special treat! We were also privileged to meet other exhibitors such as the Tube Feeding Awareness Foundation, Nutricia North America, Nestle Nutrition, Abbott Nutrition, Dr. Shar, Frida Baby, Real Food Blends, QOL Medical, Apfed and many others. When touring the exhibition hall, we were very pleased to see FPIES being represented at Abbott Nutrition's Elecare display! 

Saturday's events brought the NASPGHAN Council for Pediatric Nutrition Professionals (CPNP) Nutrition Symposium and Annual Meeting. This included a session dedicated to FPIES! Presented by Dr.Karen Freedle, Allergist at Children's Hospital of Atlanta and Bailey Koch, Registered and Licensed Dietitian at The Children's Center for Digestive Healthcare in Atlanta, this popular session was attended by Dietitians eager to learn more about FPIES and how to help families with their children's nutritional needs.

We were so honored to have been a part of this conference-- building FPIES awareness, sharing Foundation resources, and empowering these multidisciplinary medical professionals that care for children living with FPIES. We hope to continue spreading awareness and resources in future conferences in the coming years!

This post was written by the Executive Board of The FPIES Foundation 

Global FPIES Day Impact!

From the moment The FPIES Foundation announced the day in August to the official proclamation released on Global FPIES Day itself, the FPIES community has been making a great impact for the first Global FPIES Day! Immediately, our community set out to raise awareness in families' hometowns and host fundraisers, assisting the Foundation in building awareness and support to empower families and the medical community on this special day and all year round!

Global Day was established by The Foundation as a day specifically set aside for FPIES, a day to hone in on specific awareness, education and outreach objectives. An “FPIES: Be The Voice” awareness ribbon was developed for The Foundation and Global Day by an FPIES family. The unified colors of teal and orange hold great significance. Teal represents Food Allergy Awareness and Orange signifies strength and advocacy, mirrored in the Foundation logo.

On the days leading up to Global Day, the sharing of the "Be the Voice" Ribbon Frames was astounding! In all, this Facebook album reflects the faces of 220+kids (and advocates supporting them!) from around the globe! Additionally, over the week our social media pages increased in followers, and our FB posts reached over 21,000 viewers!

Awareness was built through your “Share Your 14”efforts in your community, by sharing what Global Day means to your family, and by creating the “Be the Voice” Ribbon frames! Fundraisers raised awareness and funds from events such as: T-fund Global T-shirt sales, Jamberry Nails, Etsy shops, and HP Threads custom designs. Jersey Mikes in James City, North Carolina, set the tone for establishing local awareness! The Cafe Press-FPIES Foundation storefront and Bravelet sales demonstrated the FPIES community's commitment to spreading awareness, fashionably!

We were thrilled to see kids getting in the action! There was Vivian and her custom glitter tattoo (made to her request!), and the magnitude of photo shares of kids raising awareness in Global day t-shirts. We “met” siblings creating unique Global Day flags, and were so moved by the actions of countless others! It is so powerful to see such a community of budding advocates! Great work, kids!

Our partners at Sarah's FPIES Clubhouse hosted events all month long, leading up to the big day! From naming the Awareness Heroes (be sure to stop by The Clubhouse and meet Super Sally and Flying Freddy!), to mazes and coloring events created just for the day, the Clubhouse was the place to be for kids in action!

We were excited to see several families sharing their stories in news stories, as well as online and print publications:

·         "I want you to Know about Why My Son Can't Eat", published on the Leaky Boob.com.
·       "Local Couple Seeks to Raise Awareness on Invisible Allergy" published on the Beaumont New
·       Cohen's Story, appearing on WOAY Newswatch

The work doesn't stop here! The Foundation has been following the guidelines set out to establish the day as an officially recognized National Health Observance Day. Please continue to follow our website's “News & Events” and social media postings, as we work with Advocacy representatives assisting this community in achieving this goal. There are always ways for all families and communities to pitch in-- keep posted  to learn how you can help throughout this process and beyond!

This post was written by the Executive Board of The FPIES Foundation 

Fall Family Food Allergy Events!

 The FPIES Foundation has participated in several food allergy awareness events this fall! 

On September 13th The FPIES Foundation was once again honored to provide families with FPIES information on at Boston Zoo on a day for families living with Food Allergies sponsored by Boston Children’s Hospital FACET program. 

October, along with sponsoring Global FPIES Day worldwide, brings us raising awareness locally in Massachusetts and Minnesota! 

On October 5, 2014, we were honored to be among the exhibitors to have a booth at the FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families and raised awareness to Food Protein Induced Enterocolitis Syndrome, a different type of Food Allergy. FPIES Foundation Volunteer, Victoria Warren, Emceed the event and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr. Shreffler were in attendance and met up with a large group of FPIES Families!

October 11, 2014, The FPIES Foundation participated in The FASGMN Food Allergy Resource Fair for the 4th year. Joy Meyer, Co-Director of The FPIES Foundation was on hand to raise awareness to FPIES, and included providing CheeCha Puff samples, donated by our partners at CheeCha puffs!

The FPIES Foundation is committed to building awareness, education and support to families affected by Food Protein Induced Enterocolitis Syndrome, our shoes may be small but our steps will be big! We wrapped up this season of awareness by participating as an exhibitor in the NASPGHAN conference in Atlanta! Truly, a big step--- the FPIES Foundation was the first FPIES advocacy non-profit organization to participate in this esteemed National Pediatric GI conference! Watch for future posts about details regarding this successful event!

This post was written by the Executive Board of The FPIES Foundation 

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

This post was written by the Executive Board of The FPIES Foundation 

October 2016, edited to add cards appropriate for non-food treats: 

Non-food for Girl 

Non-Food for Boy

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.

This post was written by the Executive Board of The FPIES Foundation 

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! 

This post was written by the Executive Board of The FPIES Foundation 

FPIES Events and Fundraising Opportunities

Global FPIES Day is fast approaching, set for October 14th, 2014. We are so excited for this huge awareness raising opportunity and we are also so excited that so many FPIES Families are getting involved!

There are quite a few events and fundraising opportunities right now and we thought it would be helpful to highlight them here:

FPIES Fashion!

Thanks to FPIES mom, Jessie Ipson Richens! She raised funds and awareness through her very successful TFund Global FPIES Day t-shirt & Jamberry Nail Wrap sales!  This sale was limited to enable shipments to be received before Global FPIES Day.  If you ordered one of these products, expect shipment soon! 

  

Cafe Press FPIES Foundation Awareness Shop: Did you miss the first Global FPIES Day shirt sale? No need to worry-- the Foundation has you covered! Our Cafe Press Foundation Shop has something new in the window! Awareness gear to wear and accessories for daily living, all honoring Global FPIES Day with unique designs. From magnets to drinkware to clothing for all sizes, there are countless ways to show your support for the day! 20% of sales are donated to The FPIES Foundation!

Rosie’s Creations supports Global FPIES Day! Items made by Rosie are available for sale and a portion of all sales over $10 will be donated to The FPIES Foundation from Sept.5, 2014 until October 14th, 2014.

Thirty-one Fundraiser for FPIES 2014.  FPIES mom, Elizabeth Wagner, is hosting a Thirty-one party from October 1, 2014 – October 14, 2014 to help raise awareness about FPIES. 80% of the profits will be donated to the FPIES Foundation and there will be a raffle at the end for those who have joined the group.  More information can be found in the facebook group created for this event.

Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from our Foundation’s page. With every Bravelets purchase from our page, $10 will be donated to The FPIES Foundation, to advance our cause for education, advocacy,  outreach and research.

Flowers for FPIES!

Fall is here but Spring is in the air! Keep warm weather wishes close by getting your flower bulbs from Flower Power now! For every purchase made on this site, Flower Power Fundraising will give 50% back to The FPIES Foundation. Sale ends October 15th.

Holiday Shopping for a Cause!

The FPIES Foundation will once more be selling coupon books for Bon Ton's Community Days sales event (only November 14 and 15, online or in store!). Coupon book savings total $500+ per book and at only $5 each, this bargain is incredible! If you are local to southwestern MA, you can pick up your book in person by contacting contact@thefpiesfoundation.org or you can order a booklet online and have it shipped to you for free****:

**** Add the booklet to your shopping cart and when you check out, enter the Charity State as “MA,” City as “Westfield,” and Charity as “The FPIES Foundation.” Coupon books can be used nationwide at the following stores: Bon Ton, Bergner's, Boston Store, Carson's, Herberger's, and Younker's.

For direct donations to the FPIES Foundation in honor of Global FPIES Day:

http://fpiesfoundation.org/donate/

Ongoing, COST FREE Fundraisers that support our initiatives:

There are also plenty of FREE ways to raise awareness and support the FPIES Foundation.

Change your profile picture to the Global FPIES Day awareness ribbon!

Use ‘Goodsearch’ as your search engine and automatically raise money for the FPIES Foundation:

Use GoodShop to find savings and shop at all of your favorite stores-- online or in town!

Register and do your online shopping with iGIVE! Fall is here and we're looking forward to the holidays. What better time to help The FPIES Foundation just by sharing. Tell your friends, even friends who support some other cause or charity. Each person who joins iGive in October for the first time by joining under this link: http://www.iGive.com/html/tellafriend.cfm can mean $5 automatically donated to The FPIES Foundation... no purchase necessary! All they need to do is try the iGive Button through 1/15/15.

Every day more people learn about FPIES, but every day more children are diagnosed with it. Together we can make a change. Small amounts add up fast.

Some examples of where the money goes:

‘75’ dollars will send 100 doctors FPIES information packets

‘50’ dollars will get 25 newly diagnosed FPIES families vital information to help them navigate this challenging diagnosis.

'25' dollars will distribute rack cards to at least 50 allergy fair attendees.

Additional funds are allocated in varying amounts to larger scale education, outreach, and scientific meeting/research initiatives.

Together we can all ‘Be the Voice’ for our children and others living with FPIES.

This post was written by the Executive Board of The FPIES Foundation 

The FPIES Foundation Celebrates Three Years!

The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families around the world to navigate life with Food Protein-Induced Enterocolitis Syndrome (FPIES).

This past year was packed with numerous accomplishments, big and small. The FPIES Foundation achieved its goal of launching a first-of-its-kind FPIES Global Patient Registry. The registry is a ground-breaking opportunity to directly bring families affected by FPIES together with doctors and researchers interested in learning more about this rare allergy.

We are also excited to announce that The FPIES Foundation has established October 14th as Global FPIES Day. Global FPIES Day honors families by giving the opportunity to bring specific awareness to what FPIES is to the general public.

“There are days to recognize other food allergies and rare diseases, but FPIES is unique and the children are extraordinary. They deserve this day just for them,” says Joy Meyer, Executive Director of the FPIES Foundation. Meyer says, “October 14th was chosen specifically because the first research paper to mention the features of FPIES was published in October.”

In addition to establishing the FPIES Global Patient Registry and Global FPIES Day, achievements by the Foundation that were accomplished this year include:

• Releasing a Free Educational Webinar, “Advocating for your child in the Healthcare System” made possible through our partnership with ThriveRx. Find the recording to this webinar along with documentation resources and educational tools for becoming an advocate on the Advocacy page of the website. 

• Launching ‘The Kids Spot’. This section created just for kids, older FPIES children and their siblings can find support in a fun, interactive way that shows them they are not alone. Here they can find support for school, hospital stays, and social situations. Also, be sure to check out the Brag Board and Kids in Action pages!

• Engaging the community in “FPIES Be the Voice,” “FPIES Share how you Care,” and “Love your FPIES Selfie” social media campaigns. Hundreds of families helped us raise awareness in conjunction with Rare Diseases Day and Food Allergy Awareness Week

• Designing new FPIES Awareness Flyers and Cards

• Participating in the Free Allergy Day at Boston’s Franklin Park Zoo and the Food Allergy Support Group of MN Food Allergy Resource Fair

• Partnering with Sarah's FPIES Clubhouse, a great place for kids to share fun stories and activities!

• Supporting teams raising awareness in the Food Allergy community by participating in various FARE walks nationwide.

• Appearing in the Advocacy Month Feature in Complex Child E-Magazine, "FPIES: The Formation of a Foundation."

• Engaging in Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog

• Expanding our online Provider Database to increase the number of FPIES informed providers committed to helping children living with FPIES.

• Achieving the Top-rated Non-Profit award from Great NonProfits, a distinction given to less than 10 percent of eligible non-profits.

• Appearing in “Big Y’s Dietitian’s Corner” and “Today’s Dietitian” articles, prominently featuring FPIES and The FPIES Foundation

• Participating in Feeding Tube Awareness Day, Rare Diseases Day and Food Allergy Awareness Week

The work does not stop here. The FPIES Foundation is excited for the year ahead and plans additional announcements in the coming weeks about our latest efforts in raising FPIES Awareness. 

This post was written by the Executive Board of The FPIES Foundation 

Advocating for Your Child in the Healthcare System

To register for this webinar

visit the ThriveRx website at ThriveRx.net

http://www.thriverx.net/clinical_care/teleconferences_webinars.htm

This post was written by the Executive Board of The FPIES Foundation 

The FPIES Global Patient Registry: Getting to Know Connect

The FPIES Global Patient Registry Getting to Know CONNECT

Part 3 of 3 in Registry Series

What defines the CONNECT program?

Patient Crossroads' CONNECT program is, “a registry platform, which allows patients around the world to join others in reporting their own experience of disease.”-- From the Patient Crossroads Advocacy Brochure

According to the Patient Crossroads website, “PatientCrossroads is a place where all kinds of people can share and access medical data to hasten the search for cures. Our programs enable anyone—from individual patients to global research organizations—to collect and share disease data in a way that's controlled, transparent and centered on patients' best interests. . .  The CONNECT registry enables disease communities, regardless of size and shape, to collect and share de-identified patient data in a consistent and transparent manner.”

For more, about de-identified data and Patient Crossroads' strict confidentiality policies, read here: https://www.patientcrossroads.com/advocacyfaq.html

What do I need to know about the latest updates to the Connect program?

Recently, participants received the ability to upload genetic testing results and growth charts to the database. It is essential to remember that if you elect to upload any information to the portal, you MUST remove any identifying information from the documents, such as birth date, medical record numbers, name, and so on. Printing out a copy of each electronic document, blacklining identifying information and then re-scanning to the computer for upload may be a potential way to approach this process. Uploading information is optional and does not affect participation in the surveys. For any questions about this process, please contact us at contact@thefpiesfoundation.org. For more about additional updates from CONNECT, please visit: https://www.patientcrossroads.com/

What other organizations utilize the registry process through patient crossroads CONNECT program?

◦     The Alzheimer's Association

◦     The American Cancer Society

◦     Parent Project Muscular Dystrophy

◦     Government Organizations: NIH Office of Rare Diseases Research and RD-Connect (FP7 European Union Programme)

For more, read here: https://www.patientcrossroads.com/advocacy-research-clients.html and here: https://www.patientcrossroads.com/industry-government-clients.html

What will be coming up in the future?

◦     Over the next year, regular survey releases will include FPIES-specific, IRB-backed and “research-minded” surveys in combination with surveys targeting general health topics. We will further develop a strong foundation of data, impact existing and future research, and strengthen the collective voice of the FPIES community.

◦     The ability to become aware of clinical trials or other studies, posted in the portal by researchers or other medical industry professionals

How can I register today?

1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page

2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”

3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!

4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES

5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!

6.      For additional support, contact us at contact@thefpiesfoundation.org

Additional Resources:

•  http://www.ncbi.nlm.nih.gov/books/NBK49448/
•  www.patientcrossroads.com
• http://www.hopkinsmedicine.org/institutional_review_board/hipaa_research/de_identified_data.html

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

This post was written by the Executive Board of The FPIES Foundation