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! 

Monday, September 29, 2014

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:

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 iGIVEFall 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.