12.07.2013: Food Allergy Support Group of MN Food Allergy Resource Fair The FPIES Foundation was honored to, once again, participate in the Annual Food Allergy Support Group of Minnesota’s (FASGMN) Food Allergy Resource Fair on Dec.7, 2013 in Hopkins, MN. Samples were donated by CheeCha puffs and Manitoba Harvest for the event. Food Allergy Support Group of Minnesota “Strengthening Families and Communities Affected by Food Allergies”.
December 5, 2103: The FPIES Foundation has qualified for a 2013 Top-Rated Nonprofit award from Greatnonprofits. This is a great honor, given less than 10% of eligible nonprofits have received this distinction.
November 20, 2013: FPIES FOUNDATION ANNOUNCES FIRST OF ITS KIND GLOBAL REGISTRY FOR FAMILIES. THE FPIES FOUNDATION GLOBAL REGISTRY OFFERS DOCTORS A VITAL FIRST STEP IN RESEARCHING THIS RARE ALLERGY. The FPIES Foundation is excited to launch ‘The FPIES Foundation Global Registry’. The registry is a ground-breaking opportunity to directly bring families affected by Food Protein Induced Enterocolitis Syndrome, FPIES, together with doctors and researchers interested in learning more and trying to understand this rare allergy. Read more: GLOBAL REGISTRY PRESS RELEASE
November 14, 2013: Patient Crossroads announces Food Protein Induced Enterocolitis (FPIES) newest Patient Crossroads CONNECT member! Adding FPIES to the rare disease CONNECT registry database.
November 7, 2013: “FPIES: The Hidden Scourge of GI Food Allergies”. FPIES Foundation MAB member Bailey Koch, RD, CSP, LD and Co-Director Joy Meyer, DTR were interviewed for an article about FPIES in Today’s Dietitian magazine, a leading Nutrition profession magazine!
October 7, 2013: Team FPIES Foundation raises awareness this weekend in the Boston area at the FARE Walk for Food Allergy. Families living with FPIES met in Boston, MA to participate in the FARE walk for “Team FPIES Foundation, raising funds for FARE and awareness for FPIES.
October 4, 2013: FPIES Foundation featured in the “Dietitian’s Corner” in the latest Big Y Living Well Newsletter. Amanda LeFew, Co-Director and Medical Liaison of The FPIES Foundation was interviewed for this informative newsletter article, raising awareness to Food Protein Induced Enterocolitis Syndrome in the general population. The article addresses frequently asked questions such as “Does my Child have FPIES?” and “What should I do if I suspect my child has FPIES”, to “How is FPIES tested?” to bring further awareness to this allergy to its readers.
October 3, 2013: The FPIES Foundation shares from FARE (Food Allergy Research and Education) blog, to further help families relying on the WIC program for supplemental nutrition: “Supplemental Nutrition Program for Women, Infants and Children (WIC).For families relying on services from WIC for specialty formula and foods, it is important to know that federal funds for this program have been halted due to the shutdown. Most states are continuing to fund current WIC participants and honor WIC vouchers; however, some states indicate they only have funds to continue doing this for a short period of time, so recipients may soon stop receiving benefits. If you are a current WIC participant, please reach out to your state WIC program.” Read more from FARE about “Important Notice Regarding Food Allergies and the Federal Government Shutdown”: http://blog.foodallergy.org/…/
October 2, 2013: FPIES Health Alert for Families Relying on WIC
The government shutdown is hitting home for many FPIES families who rely on the WIC program for infant formula coverage and breastfeeding support. The FPIES Foundation is reaching out to the National WIC Association (http://www.nwica.org/), a non-profit that advocates for the program, for its recommendation for our families.
WIC was placed on the federal governments “Non-Essential” list and its website (http://www.usda.gov/fundinglapse.htm) says, “Due to the lapse in federal government funding, this website is not available.”
It provides a link to the federal government’s contingency plan (http://www.usda.gov/documents/usda-fns-shutdown-plan.pdf) which says, “States may make the decision to continue operations for some period, but they will be doing so at their own risk with the understanding that Federal funds may not be available.”
As of today, October 2nd, The FPIES Foundation has found most states are continuing to fund current WIC participants and honor WIC vouchers. In some instances states indicate they only have funds to continue doing this for about a week.
The best advice for our parents who rely on WIC is to reach out to your state’s WIC program, run through your state’s health department. They should be able to give you information on what services are still available and how long they anticipate being able to fund WIC vouchers.
We here at the FPIES Foundation will continue to post information as it becomes available.
September 28, 2013: Food Allergy Zoo Day!Boston Children’s Hospital and the Franklin Park Zoo team up to offer a FREE day to kids with Food Allergies, you just have to register in advance. We have several FPIES Families planning to attend and would love for you to join us! Tara McCarthy, a Boston Children’s Hospital Nutritionist and member of the FPIES Foundation Medical Advisory Board is hosting a talk at 11:15am https://allergy.webconnex.com/food_allergy_zoo_day
September 17, 2013: We have been honored with one of the first Top-Rated Awards of 2013 from GreatNonprofits! We appreciate all of your reviews! http://greatnonprofits.org/org/the-fpies-foundation. The FPIES Foundation is one of the first nonprofits to be honored this year!
September 9, 2013: Team Sarah’s FPIES Clubhouse! The FPIES Foundation congratulates Sarah and her Team ‘Sarah’s FPIES Clubhouse’ on their walk in the Kids with Food Allergies Walk/Expo in Philadelphia, PA. Honored to see children living with FPIES raising FPIES Awareness. Thank you Sarah!
August 28, 2013: The FPIES Foundation is pleased to announce that our website complies with the HONcode standard for trustworthy health information on the internet and has been awarded certification from HON. HON (Health on the Net) Code, the code of ethical conduct, is “the commitment to reliable health and medical information on the internet.”The FPIES Foundation was approved for the HON code based on the demonstration of our intent to contribute to quality medical information with objective and transparent information with respect to the eight principles of the code: authority, complementarities, confidentiality, attribution, justifiability, transparency, financial disclosure, and advertising.Certification of the HON code assures that our website respects quality criteria and contributes to offering trustworthy health information for families, patients and professionals. Read further on the HON code on the HON website, “What is the code”. The code is displayed on the sidebar of the website.This site complies with the HONcode standard for trustworthy health information: verify here.
The FPIES Foundation Celebrates Anniversary with Huge Social Media Awareness Day
Allows families to Text-A-Wish to support Foundation’s Efforts
August 25, 2013 The FPIES Foundation is excited to celebrate its second anniversary of empowering, educating and helping families navigate Food Protein Induced Enterocolitis Syndrome, or FPIES. The Foundation is planning a week-long celebration leading up to August 31, 2013 honoring the medical professionals, volunteers, and most importantly, the families who help raise awareness. These amazing, strong families live with this rare allergy every day and are the reason the FPIES Foundation exists.The week launches Sunday, August 25th, 2013 with an exciting social media campaign filled with inspiring stories and the latest FPIES information and awareness opportunities.The week caps off with the most aggressive FPIES Foundation fundraiser to date.On Friday, August 30th we team up with the Wish Upon a Hero Foundation for a special social media awareness day. FPIES Awareness will race across Facebook, Twitter and personal cell phones as people participate in our Text-to-Donate day. Just text WISH on August 30th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.Read more here: The FPIES Foundation Anniversary 2013 Press Release.
Aug. 20, 2103: Families living with FPIES seek to build FPIES awareness by participation in upcoming Food Allergy Events:
Sarah’s FPIES Clubhouse participates in “Strides for Safe Kids” Walk for KFA (Kids with Food Allergies)!
Team FPIES Foundation walks for FARE in Boston, MA on Sunday October 6, 2013.
Fussah’s Fighters walk for FARE in Pittsburgh, PA on Sunday September 15,2013.
Aug. 7, 2013: The FPIES Foundation is proud to announce the addition of Tara McCarthy MS,RD,LDN. Tara is a Registered Dietitian and Licensed Clinical Nutrition specialist at Boston Children’s Hospital and brings additional allergy nutrition experience and expertise to the table. Read more about Tara and our Medical Advisory Board members here: http://fpiesfoundation.org/leadership/
Aug. 5, 2013: FPIES Wordle gear is here!
The FPIES Foundation announces the release of FPIES Wordle 2013. The original wordle t-shirts were done by two mothers of children living with FPIES, Tina Ellingson Darling and Jill Terwey in 2011. With multiple interest within the community since then to have it done again, the FPIES Foundation organized this updated version, with permission from Tina and Jill for the original idea, and help from Foundation volunteers, Vicki Hayes Garding and Cyndi Merrill to complete the FPIES Wordle 2013 design. It is available to purchase in the Foundation’s Cafe Press secure store front- in a variety of gear for the entire family! Help raise awareness with your FPIES Wordle gear today!
July 24, 2013: The FPIES Foundation is honored to announce the newest additions to the Medical Advisory Board. Dr Wayne Shreffler and Dr Qian Yuan bring Allergy/Immunology and Gastroenterology expertise to the table at Massachusetts General Hospital Food Allergy Center, working side by side as a team. The FPIES Foundation recognizes this need for a multidisciplinary approach to caring for a child living with FPIES.
Wayne Shreffler, MD, PhD is Board-Certified in Pediatric Allergy and Immunology and Chief of Pediatric Allergy & Immunology at Massachusetts General Hospital Dr.Shreffler is an Associate Professor of Pediatrics at Harvard Medical School; Director of The Food Allergy Center; and Principal Investigator of the Center for Immunology and Inflammatory Diseases at Massachusetts General Hospital , Massachusetts.
Dr. Qian Yuan, MD, PhD is a Board-Certified Pediatrician in Pediatric Gastroenterology and Nutrition. Dr.Qian Yuan is a Clinical Director at Massachusetts General Hospital Food Allergy Center and an Assistant Clinical Professor in the Department of Pediatrics at Harvard Medical School Boston, Massachusetts.
June 7, 2013: The Centers for Disease Control (CDC) announced that they have appointed FPIES (and Food Protein Induced Proctocolitis) with a diagnostic code. Food Protein Induced Enterocolitis Syndrome has been approved for diagnostic code K52.21, among allergic digestive diseases. This is an important step that has the building blocks to make diagnosis and medical/formula coverage easier for a lot of children and their families. Dr.Anna Nowak-Wegryzn (The FPIES Foundation Medical Advisory Board member) and IAFFPE were instrumental in the passing of this code. We know there is more work to be done to make sure all children and families have access to adequate care and look forward to the continued work with this community in collaboration with our medical advisory board in for the multidisciplinary approach needed to this spectrum within the diagnosis of FPIES.
May 12-18, 2013: Food Allergy Awareness Week. The FPIES Foundation theme for Food Allergy Awareness Week is “Awareness is Action”! Your actions are “paving the path”. Together, with collaboration of families and medical professionals, we will continue to make changes today to building this lasting foundation for tomorrow, providing a network of caring, the support your need to support your child.
I didn’t know what FPIES was… now I know.
I didn’t know what an elimination diet was… now I know.
FPIES…Food Protein Induced Enterocolitis Syndrome
Not a typical food allergy. It can take hours before severe symptoms show up.
The good news is, FPIES families are not alone.
Resources, tools and support, to overcome, to educate, encourage, empower, advocate, inspire,…
I didn’t know what FPIES was….now I know…Awareness is key!
May 7, 2013: Raising awareness does not have to be elaborate or involve planning large events. Raising awareness can be simple and start with a single conversation. As Food Allergy Awareness Week approaches, tune in to The FPIES Foundation’s youtube channel for inspiration on ways to “Start the Conversation” and to promote FPIES awareness today. Be sure to stay posted for the upcoming Awareness is ACTION packet, tools to help you join ranks with other families as you reach out in your community during FAAW 2013.
May 6, 2013: The FPIES Foundation shares aPress Release to announce The FPIES Foundation 501(c)(3) Non-Profit designation and honor Food Allergy Awareness Week 2013. “FPIES FOUNDATION OFFERS “HOME BASE” FOR FAMILIES BATTLING RARE DISEASE DURING FOOD ALLERGY AWARENESS WEEK”…”The goal of The FPIES Foundation is to provide support and encouragement, as well as the tools for managing FPIES on a day-to-day basis. Foundation Chair Joy Meyer says with the recent designation as a non-profit, The FPIES Foundation is truly a “home” families can trust. “We aspire to help families feel welcomed, to know that they have a place where they can get help, support, and a sense of community,” says Meyer.”…
The FPIES Foundation is participating in Food Allergy Awareness Week (FAAW), May 12-18, 2013 with awareness campaigns through our website, social media and other online tools. We hope you will join us in spreading the awareness about FPIES!
April 28th, 2013 (4:00 – 8:00 pm) Family-friendly, Food Allergy Safe EventBig Quack Water Park EventWater Park of America1700 American Blvd E, Bloomington, MNFood Allergy Support Group of Minnesota (FASGMN) a foundation “empowering families affected by food allergies by providing support, education, and a community to build personal connections” has exclusive use of the water park during this time, meaning that every ride will be open with approximately 1/5 of the people there. Why not try surfing, the body slides, the family raft ride, tube slides, the wave pool or the lazy river. The bonus is that the proceeds from this event will benefit MN families affected by food allergies. Tickets must be purchased in advance (before Saturday, April 27 at 8pm). Learn more about the event
April 1, 2013: The FPIES Foundation is proud to welcome new members to our Medical Advisory Board!
Dr. Luqman Seidu is an Adjunct Professor and Board-Certified Pediatric Allergist/Immunologist at Georgia Allergy, Immunology and Asthma in Atlanta, Georgia.
Dr. Benjamin D. Gold is a Board Certified Pediatric Gastroenterologist atChildren’s Center for Digestive Healthcare, LLC (GI Care for Kids) in Atlanta, Georgia.
Bailey Koch is a Registered and Licensed Dietitian and is a Board Certified Specialist in Pediatric Nutrition and successfully completed the ELL Foundation PAC Food Allergy and Intolerance Training Certification for Dietitians. She is a part of the team at Children’s Center for Digestive Healthcare and Atlanta Pediatric Nutrition, Inc. in Atlanta, Georgia.
National Organization for Rare Disorders, Inc. (NORD) is celebrating their 30th Anniversary this year. What is the most important message? Your/your child’s rare disease story.
NORD invites any member of the rare disease community who would like to share a story about an individual patient or family to submit through their webpage.
Feb. 28, 2013: Rare Disease Day 2013
From National Organization for Rare Diseases (NORD): “The global theme for Rare Disease Day 2013 (February 28, 2013) will be “Rare Disorders without Borders”; within the U.S., the observance of Rare Disease Day will also include recognition of NORD’s 30th anniversary.
What is a Rare Disease?
Rare Diseases are a life threatening or chronically debilitating disease with a low prevalence and high level of complexity
6,000-8000 rare disesease have been identified
80% are of genetic origin and 50% affect children
No cure exists for the vast majority
To learn more and follow Rare Disease Day US activities and events on the official national website: www.RareDiseaseDay.US
Feeding Tube Awareness Foundation celebrates their 3rd annual awareness week to spread awareness and education for children and adults with feeding tubes. “The theme for 2013 is “You’re Not Alone.” When entering into tube feeding, families often feel very alone. Very few know any other person who has experienced tube feeding. It can also be a time of medical complexity. But, there are hundreds of thousands of tube feeders in the United States alone. We are not alone. With greater awareness our numbers will be known.” To learn more,including activities planned visit: Feeding Tube Awareness Week
For some children with FPIES, a feeding tube can be a necessity to getting optimal calories and nutrition to grow and thrive. The theme for Feeding Tube Awareness Week 2013 is “You’re Not Alone”.
The FPIES Foundation is honoring Feeding Tube Awareness Week in our February blog post. If your little one is, or has been, on a tube feeding- will you share some of your experiences? What is the most positive thing about your little one having a feeding tube? What is one of the challenging aspects that others may not be aware of with a feeding tube? What support avenues have helped you? Send us your thoughts (and a picture if you would like!) by Feb. 6th, 2013 to firstname.lastname@example.org
01. 29. 2013: Neocate Upgrades. Nutricia announces changes and upgrades to their product line and wants communities, such as those served by The FPIES Foundation, to be aware of changes to their Neocate range over the next coming months. “Neocate Infant, Neocate Junior and Neocate’s EO28 Splash will be improved and made available with an updated nutrition profile based on latest scientific recommendations. The first product to be updates will be Neocate Junior. The change is in the micronutrients whereas we are following latest recommendations for DRI’s by the Institute of Medicine.” For more information, download this flyer, provided by Nutricia (a PDF) or visit Neocate for more information.
01.07.2013:The FPIES Foundation responds to new label Neocate Jr. Unflavored issues reported. The FPIES Foundation was founded with families in mind– our mission is to support, educate, and empower. Parents have expressed concerns regarding symptoms and/or reactions from the recent Neocate Jr. label change (announced 08-31-2012). In response to our interactions with concerned families and Nutricia representatives, The FPIES Foundation would like to offer this discussion thread on our Foundation moderated support board to provide an avenue of support for sharing experiences, insights, and constructive viewpoints.The families that have children currently affected in this Neocate Jr. label change may be low in number or high in number right now, but no voice is too small to be heard. Sharing your child’s experiences (tolerating or not) and providing further insights and experiences may help. Many of us, who are well aware that the answers simply may not be there in this rare diagnosis, take comfort that our experiences can be used for future knowledge and awareness of this allergy that affects infants/children in such basic ways. With this in mind, The Foundation would like to share the following information from our conversations with Nutricia representatives:
Nutricia is committed to helping these families
Nutricia is very much interested in learning from families (both currently affected and non-affected) and furthering awareness of FPIES.
Nutricia has encouraged families, and the practitioners who treat their children, to contact them directly to provide further, individualized needs for their children. The Foundation encourages families who would like to work with Nutricia directly to contact Nutricia.
From these discussions and any other private contacts to the Foundation from families, Nutricia would like to continue on-going discussions with the FPIES Foundation to work through a solution that may help affected families to include future/ongoing awareness of FPIES.Please continue to share, and encourage others (in the FPIES community and beyond) to share their experiences to help further awareness of the needs of our children.