Sunday, August 30, 2015

August 2014- August 2015: Our Fourth Year in Review


Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories--  we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in the face of this diagnosis and learning to self-advocate. The hallmark of these past four years has clearly been connection, and here at the FPIES Foundation, we are so honored to be a part of your family's journey. As we move into our fifth year together, we strive to maintain our connections and to provide all members of this remarkable community with even more tools, resources and sources of empowerment.

So, what have we been up to since last August? We focused on:

Empowerment
  • Expanding tools for daily  life with FPIES:
Building Global Awareness and Resources by:

Education Initiatives:
  • Providing families with FPIES information at community events, such as Boston's Franklin Park Zoo, Boston FARE Walk 2014, and FASGMHN Food Allergy Resource Fair
  • Fostering online awareness events, such as our “Be the Voice,” “FPIES in a Word,” and the “FPIES Recipe Challenge” campaigns
  • Sending FPIES awareness packets to families for FPIES resources at their fingertips (contact us today for your packet!) 

  • Participation in Several Awareness Days throughout the year, such as:

    • Feeding Tube Awareness Week 
    • 'We are #FPIES. We are the #1in10' photo album online campaign for Rare Disease Day 2015; putting a face on the 1 in 10 people worldwide that suffer from some type of Rare Disease. 
    • Food Allergy Awareness Week 2015. We participated in several awareness activities including a photo album, inspired by our community, that shares pictures and corresponding words illustrating life with Food Protein Induced Enterocolitis Syndrome. .
    • May 4th was recognized in the US as a day during Food Allergy Action Month for raising ‎FPIES awareness.  Families were encouraged to raise awareness and get the conversation started with their social media accounts-- #‎AskMeAboutFPIES
    • In March, for National Nutrition Month, we asked Bailey
      Koch, RD, CSP, LD of our Medical Advisory Board to come up with some essential nutrition tips and recommendations geared towards FPIES families.
  • Debuting at Community and Scientific Events such as: 
    • The Annual NASPGHAN conference, a conference for Pediatric GI health professionals that includes Physicians, Physicians Assistants, Nurses and Dietitians, providing FPIES materials to these health practitioners vital to our children’s medical care.

    • The FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families,  FPIES Foundation Panel Member, Victoria Warren, Emceed, and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr.Shreffler were in attendance. A large meet-up of FPIES Families was celebrated!


As we look to another year ahead, we are so grateful for how much growth we have seen in the FPIES community over the years. We are humbled that all of you have shared in this journey and will hopefully remain actively involved in the years to come. It is because of your support that The FPIES Foundation has been honored, yet again, with a prestigious 2014 Top-Rated Award by GreatNonprofits. We are also proud to have been featured on Rare Disease Day recap from our friends at Global Genes. We would like to send a big thank you to all our families who made sure FPIES had a strong voice on this international day of awareness, and all other days this part year!

In addition to our incredible community of FPIES families, we continue to be amazed at the tireless efforts of our Medical Advisory Board in their advocacy for FPIES and food allergies, not only among families but also among their colleagues.
  • Last October, MAB member and Registered Dietitian Bailey Koch spoke at the Pediatric Nutrition Conference of NASPGHAN, educating other professionals about FPIES.
  • The Western Society for Allergy, Asthma and Immunology Conference featured a discussion on FPIES, led by Dr. Glenn Furuta of our Medical Advisory Board, looking at the goals of the gastroenterologist in regards to FPIES care.
  • Dr. J. Andrew Bird of our Medical Advisory Board details the newly released FPIES survey discussed at the recent AAAAI meeting. The discussion focuses on gaps in the diagnosis and management of FPIES. 
  • FPIES Foundation Medical Adviser Dr. Qian Yuan, a Pediatric Gastroenterologist with Mass General Hospital, released a new children's book: “Macaroni Isn't the Same Without Cheese.” It's written to help school age children understand EoE - a message that applies to kids living with FPIES, too.

Families, supportive medical professionals, and the amazingly strong infants and children we all support continue to fuel the passion of The FPIES Foundation, every day, every year. Together, small shoes CAN take big steps towards awareness, support and advocacy.

If you would like to learn more about our activities, be sure to check out our annual reports and current events pages! If you would like to learn how you can make a greater impact, contact us today for information about volunteering and special partnerships. Join us as we continue to connect, support and empower for many years to come.

Monday, June 29, 2015

Allergy Cookie and the Teal Pumpkin Project: UPDATE




July 2015 Update: A message from Tiffany Rogers of Allergy Cookie: “I regret to inform you that you that due to a number of factors, including recent changes in the terms and dependability of our suppliers, we have decided not to sell Teal Pumpkins for our Walk Team or on our website this year. The good news is that FARE’s Teal Pumpkin Project campaign is still alive and well and the food allergy community expects to continue to see a growth in support of it this year!  We are excited that Allergy Cookie will be helping to promote the Teal Pumpkin Project campaign and bring more awareness to food allergies, as well as encourage more people to use non-food treats to include ALL children.  Even though we won’t be selling pumpkins, my family still plans to reach out in our local community and encourage our friends, family, and neighbors to get involved.”


Tiffany Rogers founded a company called Allergy Cookie and they are offering specially designed Teal Pumpkins filled with non-food treats to handout on Halloween. They even have a special pumpkin available for FPIES - Food Protein Induced Enterocolitis Syndrome. 

Tiffany is the mother of a 3 year old child with severe multiple food allergies. She and her husband also suffer food in tolerances. Her son's birthday just so happens to be Halloween and when he turned 3 she didn't want to think about explaining to him why on his birthday he wouldn't be able to have any of the treats from trick-or-treating. That's when she heard about FARE's 'Teal Pumpkin Project.' 

Families participate in the 'Teal Pumpkin Project' by handing out non-food treats on Halloween and identifying their house as allergy-friendly by painting a pumpkin teal. 

'It was such a blessing,' Rogers says, 'to have my son receive treats while trick-or-treating on Halloween night he could keep.' 

Rogers points out food allergies are not one size fits all and that's where Allergy Cookie's Teal Pumpkin products come in. In June, they have been offering the pumpkins as part of a special fundraiser competition with proceeds benefiting FARE and a variety of different food allergy organizations, including the FPIES Foundation. 

The hope is to raise research money and awareness. Rogers asks those without allergies to participate in the 'Teal Pumpkin Project' and think about what it could mean for a child, like her son, on Halloween. 


For more information on Allergy Cookie or their Teal Pumpkin Fundraiser, and how you can order your Teal Pumpkin for Halloween, please visit their page http://www.allergycookie.com/tealpumpkinfundraiser/

Sunday, June 14, 2015

A Professional Spotlight on FPIES: Foundation Medical Advisory Board Member, Dr. J.Andrew Bird, Participates in FPIES Discussions at AAAAI

A Professional Spotlight on FPIES:
Foundation Medical Advisory Board Member, Dr. J.Andrew Bird, Participates in FPIES Discussions at AAAAI






Dr. Bird, tell us about this year’s annual meeting-- we were thrilled to hear about your presentation there! Could you share with us more about it?

The American Academy of Allergy, Asthma and Immunology (AAAAI) held its annual meeting in Houston, Texas this past February.  During the meeting, data was presented from a recent survey distributed to the AAAAI membership aimed at understanding allergists’ current practices and potential knowledge gaps in regards to diagnosis and management of FPIES.  As a member of the Adverse Reactions to Food Committee, I was asked to assist Drs. Matthew Greenhawt at the University of Michigan and Anna Nowak-Wegrzyn from the Icahn School of Medicine at Mount Sinai in New York in developing and distributing the survey.    


What did this survey show?

  • Four hundred seventy allergists responded to the survey (10.8%) of AAAAI members.  The majority (88%) were from the U.S. and most were in private practice (61%). 
  • Milk/soy FPIES was managed by 74% of respondents, and approximately 60% have managed solid food FPIES. 
  • When given a clinical scenario 80% of respondents were able to correctly identify FPIES. 
  • Knowledge gaps were found in the ability to correctly manage FPIES, in particular with choice of appropriate formula for a child with either cow’s milk or soy FPIES. 
  • Elemental formula was identified as an appropriate substitute by only 64% for cow’s milk FPIES patients and 68% for soy FPIES patients. 
  • Additional variability in management was seen in consensus amongst allergists regarding whether diagnostic testing was necessary or useful and,
  • Overall, oral food challenges are underutilized for reintroduction of triggering foods.


What would you say are the important conclusions from this survey for those living with FPIES?

Results from the survey provided firm data regarding needs to be addressed in the allergy community in order to take better care of children with FPIES.  Formal guidelines for care and management of children with FPIES are currently being developed and will assist with standardization of practices amongst physicians caring for children with FPIES.

J. Andrew Bird, MD is Board-Certified in Allergy and Immunology.  Dr.Bird is an Assistant Professor of Pediatrics of the Food Allergy Center at Children’s Medical Center Dallas, Texas.


Thank you, Dr. Bird! For future professional spotlights on FPIES, be sure to subscribe to The FPIES Foundation's blog!