Happy 2021 to all! Now a full month into our New Year, we want to invite our community to join us in resolutions to spread FPIES education and awareness throughout 2021! With the state of the pandemic and many of us being homebound, outreach may be a bit of a different process than it has been in years past. But never fear—The FPIES Foundation has all of the online resources you need to educate yourself, your family, care networks, and your local communities about FPIES!
Take part in research, all from the comfort of your own living room! Did you know that The FPIES Foundation hosts the only Global FPIES Patient Registry and that it is FREE to register? With several surveys already within the registry, you can make your family’s voice a part of research today! www.fpiesregistry.com
Be the voice in your state and national legislation! There are some powerful pieces of legislation that our communities would like to get put in action and we need your help! One such important piece is The Medical Nutrition Equity Act (S-1194, HB-2587), (link out to Medical Nutrition Equity Act – The FPIES Foundation) which aims to improve coverage of medical nutrition (such as elemental formula) for individuals affected by a variety of conditions, including FPIES. Family stories are needed to help raise awareness for this essential legislation— to learn more or to submit your story, visit “Patients and Providers for Medical Equity” (link out Patients and Providers for Medical Nutrition Equity – Supporting the Medical Nutrition Equity Act) today!!
Brush up on your knowledge of FPIES and coping strategies for living with this often frustrating diagnosis! Visit our online learning library today (link out here FPIES Foundation Learning Library – The FPIES Foundation), where you can explore webinars featuring a wide variety of topics, from recipe tutorials, to stress management and mindfulness resources, to information about elemental formula coverage. Commit yourself to visiting the online learning library at least once a month to further your knowledge and understanding of life with FPIES!
Are you a veteran parent? Already watched all of the webinars? Feel free to share your favorite links with family members, child care workers, or anyone that may need to expand their knowledge of FPIES!
Update medical and school records! The New Year is a great time to revisit your child’s care plan and evaluate if any updates are required. Are there any new safe foods? Any new triggers to add to the list? Is your child preparing for preschool or kindergarten and you need to prepare documentation for the school? Be sure to check out our webpages (link out to toolbox at The FPIES Foundation) related to care planning, emergency planning, documentation, food journals, and school resources to get started. It can also help to ask for care planning or documentation tips from FPIES community members that you already know!
Read a family story or submit your own! I remember when I first started learning of other families’ experiences with FPIES and how helpful it was to learn that we were not alone! Take a minute to read from our album of inspiring family stories today (link out to insp. Fam. page The FPIES Foundation), and if you haven’t already, maybe find the inspiration to submit your own! Email us for more details!
Find a way to join in a fundraiser at some point during the year. It could be by supporting The FPIES Foundation via AmazonSmile, a free-to-you fundraiser that simply donates to The FPIES Foundation every time you make certain purchases on Amazon. There is no cost to you, period! If you would like to create a fundraiser of your own or an online awareness event, just let us know and we can help you get started.
Connect!!! Make a goal to connect with other families in the FPIES community at least once a month. You could share a recipe, contribute ideas for food-free celebrations to FPIES forum conversations, or even write a guest blog post for us at The FPIES Foundation, highlighting tips and tricks that have helped your family cope with FPIES in your daily lives. The possibilities are endless, and it really is essential that we all keep in mind that we are all in this together, kids and adults, medical professionals and patients.
Send a smile! Find a time this year to say thank you to someone in this community who has helped you or your little one in some way. It could be a medical professional, a family that lives on the other side of the world, or even your child’s older sibling who always finds a way to help your little one smile, even when reactions happen. Make time to reach out and say thank you to those who have helped your family along the way!
At The FPIES Foundation we will continue to commit ourselves to delivering resources for families, medical professionals and care communities in order to expand knowledge and awareness of FPIES on a global scale. Anytime you need to reach out and connect, we are here to help you navigate your family’s journey through any ups and downs of this often frustrating diagnosis. It is our greatest hope that our entire community have a promising year of growth and peace ahead!
This post was written by Amanda LeFew, The FPIES Foundation Co-Director