Monday, February 23, 2015

FPIES Foundation joining forces with Rare Diseases Community and Global Genes

FPIES Foundation joining forces with Rare Diseases Community and Global Genes
350-million voices to make a difference

'You are not alone.' It's a mantra of sorts here at the FPIES Foundation. You are not alone on food trials, you are not alone at 3 a-m with a sick child, and you are not alone in the emergency room desperate for answers, and we will not let you be alone!

Rare Diseases Day 2015 is fast approaching on February 28th and we'd like to highlight the fact that you are not alone, and neither are we.

According to NORD and Global Genes, a disease that affects less than 200,000 people at any given time is defined as rare. FPIES is recognized as a Rare Disease, one of 7000 recognized by the National Institutes of Health. 

A rare disease is a disease that affects less than 200,000 people at any given time. That's 350-million people worldwide who might be battling a different diagnosis, but the fight for advocacy, awareness and research is the same.

That's why we're proud to partner with Global Genes - a leading global rare diseases advocacy organization.

Executive Director Andrea Epstein says when people are starting their rare disease journey it can be daunting.  Collectively, though, she says the Rare Diseases Community can come together so newcomers feel they 'don't have to reinvent the wheel.' Epstein says, "Chances are, tools for other rare diseases may be relevant,” meaning tools for day to day living that are useful for one disorder can help out another.

Global Genes specifically offers Rare Disease Tool Kits - collaborative resources updated in real time with comments and videos, focused on awareness, daily management strategies, and more. The idea is to draw on real life experiences so the next family can immediately benefit.

Took Kits currently available or in the works include:

Epstein says, "One thing we are very proud of is we create tools that all foundations or individuals can use." She points to Global Genes 'Blue Denim Ribbon Campaign' as a way everyone can raise awareness for Rare Diseases Day.

On the heels of Rare Diseases Day, Global Genes is hosting its first ever Giving Day. 'Give Rare' is March 3rd.  It's a day for the Rare Disease Community to come together in the hopes of raising millions of dollars for their individual causes. Check out the FPIES Foundation's 'GiveRare' page here: 

Epstein says, "It feels really good when you know you have helped a family on their journey and made a difference." We couldn't agree more.

This article was written, and interview conducted by, Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

Monday, February 9, 2015

Rare Diseases Day 2015: Living with a Rare Diagnosis

Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives”. (What is a Rare Disease)

The theme for Rare Disease Day 2015 is, “Living with a rare disease: Day-by-day, hand-in-hand”.  In honor of this, we asked the community to give one word to describe what living with FPIES means.  We received numerous impactful responses, demonstrating our strong solidarity as a community.

How can you get involved? 

1. Download and share Rare Disease Day communication materials! Share your awareness of Rare Disease Day with your online community, utilizing logo’s, banners, badges, and social media profile pictures.

  • Global Genes – Global Genes has “I love someone RARE” profile pictures again this year; you can upload your child’s photo for this unique profile picture, or simply use one of their other profile pictures and banners for your social media profile.  Also be sure to share your pictures with us and Global Genes on social media!
  • Rare Disease Day -  Rare Disease Day has the official logo and countdown ticker to add to your blog or website as well as posters and banners to show your support of this day.
  • The FPIES Foundation – visit our website and Facebook Rare Disease Day Event page to click and share banners, logos, and profile pictures created just for Rare Disease Day awareness of FPIES.

2. Share FPIES awareness materials in your online community – visit our website and Facebook album to share these flyers online. 

3. Share your family story of what living with FPIES means to you. Sharing your story shares awareness, and awareness is key!

4. Distribute Awareness Materials in your local community – at the doctor’s office, at daycare or school, at your playgroup. Download, print and share these flyers in your community: 

5. Start the Conversation!  An awareness conversation does not have to be formal or lengthy. Some great settings include but are not limited to moms’ groups, breastfeeding support groups, new parent education groups, staff meetings (at schools,nutrition clinics, etc). Pick a setting that is meaningful to you and then make a call!

6. Participate in or host an awareness event in your community!

  • Support group meeting- get together and share what it is like to share a rare diagnosis. “You are not alone”. 
  • Fundraiser event – host a walk, host an FPIES awareness event, initiate a wear jeans at work day fundraiser, or participate in ongoing online fundraisers. 
  • Participate in Give Rare Day March 3rd, a Global Genes Initiative that benefits non-profits.
7. Wear your awareness materials!

  • Café Press Foundation gear - “Rare But Real” t-shirts, with thanks for the original design by Crystal Martin, these t-shirts are now available through the Foundation Café Press store.  
  • Be Brave Bravelets - Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from the 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.
  • Global Genes Ribbon - The Blue Denim Genes Ribbon logo, from Global Genes, has become an internationally recognized awareness symbol for rare and genetic diseases.
8. Rare Disease Week on Capital Hill - participate in your community's legislative events

9. Check out Global Genes & Rare Disease Day websites for additional resources!

Follow our Website News and Events and Social Media for Foundation Activities honoring RDD

  • Follow us on Facebook and share awareness materials 
  • Follow on Twitter, #Living with FPIES #WRDD15 #Careaboutrare 
  • Join our online events for RDD 

Wednesday, December 3, 2014

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!