Showing posts with label FPIES Awareness. Show all posts
Showing posts with label FPIES Awareness. Show all posts

Thursday, February 1, 2018

Our Blog Has Moved!


Our blog has a new address!  
We operate this blog to provide a network of caring -- the support you need to support those living with FPIES. 

We recently have been updating our website and with that, we have a new blog address.  Our new blog (including all posts here) is now located within our website for your convenience. 



As of Jan.1, 2018, all new posts will appear on the new blog:  
http://fpiesfoundation.org/blog/ 




Wednesday, October 25, 2017

Living with FPIES: Halloween Idea's!

Halloween is one of my favorite days of the year. I love holidays in general, and even though Christmas will always have a special place in my heart, there are some pretty big expectations wrapped up (pun intended) around December 25. Big extended-family get-togethers, possibly involving travel, a fancy dinner – of which our children living with FPIES may or may not be able to eat a single thing without major modifications – and choosing (and paying for) the perfect presents. All of that can definitely add some stress to the joy of the season.

But Halloween… dress up, eat treats, and hang out with our kids? Yes, please. Up through my twenties, I was all about the candy. I was almost as excited for the day after Halloween, when all the sweets went on sale. But now, after having had two kids with FPIES, and having to restrict my own diet in ways that rule out most commercial candy, we celebrate in different ways, but enjoy it even more. My kids are a few months from turning 3 and 5, so what works for our family may not work for yours, but I hope you can find some ways to keep the focus off the candy and on having fun.

We do Halloween/pumpkin/fall crafts throughout the month, mostly card making. Making cards has got to be my favorite craft of all time, because it’s relatively cheap, easy for me (I provide supplies and some ideas, then my involvement is limited to occasional help with scissors and reminders like “don’t put stickers on the dog”), and the finished product helps us stay connected with family and friends who don’t live close to us. We haven’t decorated very much in the past, but I hope to start next year. We also are going to paint some pumpkins teal to put on our front porch in honor of the Teal Pumpkin Project

But what about the day itself? And what to do about trick-or-treating? For some families, not participating in trick-or-treating may be the best option, but we have always let our kids participate. We only took them door-to-door for the first time last year, but the preschool they attended had a trunk-or-treat event every year during the school day. All kids are different, but we found that before the age of two, they had fun but didn’t really get the concept, so we just quietly went through their bags for any non-food items they may have gotten (like bubbles), made a big deal out of those, and took all the candy away.

What we did last year, and will do again this year, is to start off by giving them a small basket of treats. I love those little tin pails that come in different colors from craft stores, so I put some special things in those. We participate in the Teal Pumpkin Project, so I often include a few of whatever we’re handing out for that. This year, they’re getting an orange-and-black mini notebook, a Halloween pencil, a glow stick or two, a Spiderman toothbrush, an orange matchbox car, a jumping spider, play dough, a small coloring book, and some safe treats. (I’ll list some ideas at the end of this post for homemade treats, though obviously this will look very different depending on what your safe foods are.)

Then we take a similarly small bucket and trick-or-treat. Our children are young, so we go early, and don’t visit very many houses. Honestly, sometimes it can be hard to watch my FPIES kid trick-or-treating, collecting candy that I’m going to have to take away from him, but knowing that he has some non-food and safe treats he’s excited about waiting for him at home really helps both him and myself. When their buckets are full, we come home, and get set up on the porch to hand out treats. I think this was the favorite part of the day for all of us last year. The boys, extroverts to the core, acted as hosts in handing out our candy and non-food treats, played with the new things they’d gotten from us, munched on sugary snacks they don’t eat very often, stayed up past their bedtime, and just generally had a ball.

My oldest has outgrown FPIES, and my youngest has recently added a particular brand of chocolate to his list of safe foods, so my oldest will get to keep his loot from the night, and we will trade with my youngest for some safe things. I know some families do the Switch Witch, where they leave all or some of their treats in a special place, and the “Switch Witch” comes by sometime in the night and leaves a present in exchange for the candy – like a book, movie, stuffed animal, or so on. Older kids may enjoy donating their candy to the troops or utilizing a dentist buy-back program.

For us, Halloween has been a fun, no-stress time of hanging out together as a family, and the fact that for most of our Halloweens together so far we haven’t been able to give our kids commercially produced chocolate hasn’t impacted that at all. We focus on the fun of dressing up, getting some special surprises, visiting our neighbors’ houses, and ending the day by playing on the porch, handing out treats and getting to see all the costumes that other kids are wearing.

How does your family handle Halloween?

Homemade Safe Treat Ideas:
  • Lollipops – I made this with just sugar, water, and cream of tartar, and I suspect they’d work fine without the cream of tartar.
  • Animal cookies  – I’m going to make these with a jack-o’-lantern cookie cutter.
  • Marshmallows  – homemade marshmallows are surprisingly easy to make. I substitute cane sugar syrup for the corn syrup and skip the powdered sugar/cornstarch topping. When the marshmallows are ready, I melt them in the microwave, mix with a safe cereal and a little safe oil, then pour into an oiled pan to make Rice Crispy Treats.
  • Chocolates – if you have a safe chocolate chip, or even chocolate bar, you can melt the chocolate and pour it into silicone molds to make fun shapes. Or just eat.
  • Gummies – I haven’t made these myself, but if you have juice and gelatin as a safe, the steps are fairly simple.
  • You could use silicone molds to freeze purees or juice (or even water!), or bake muffins or cupcakes in.
  • You could use cookie cutters to make cookies, or cut shapes out of soft foods, such as fruit or homemade granola bars.
This post was written by FPIES Foundation guest blogger volunteer Janie. Janie Dullard lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.


Wednesday, August 30, 2017

Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  


With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 



The Mighty has given us the opportunity to share your experiences in stories such as:




We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit https://themighty.com/submit-a-story/

Monday, October 10, 2016

Find Your 14 Tools to Get Involved on Global FPIES Day

This year we will be celebrating the third annual Global FPIES Day on October 14th. Once again we are encouraging you to find your 14! Reach out to friends, family, or community members and get involved this Global FPIES Day with one or more of these 14 suggestions.

#1. Create a “Be The Voice” picture frame.
Click here for details on how to download and create your frame. Then share it on your favorite social media site and invite 14 friends or family members outside the FPIES community to make one as well in honor of your little one.


#2. Create and display a FPIES awareness ribbon.
The orange and teal awareness ribbon featured on the “Be The Voice” picture frames is a visible reminder of the strength and advocacy of the FPIES community. You can get your whole family involved in creating ribbons that can be worn or used as decorations. Here are some ideas:
    • You can find two printable ribbon templates here (one flat and one 3D). Print one out for each family member and let everyone decorate them in orange and teal.
    • You can also use the flat template to create a stencil (just cut out the ribbon, leaving the rest of the paper intact). Then use the stencil to paint a FPIES awareness ribbon on a t-shirt, tote bag, notebook, or whatever you like!
    • Make a perler bead awareness ribbon. You can see an example of a perler bead awareness ribbon here and a template for another version here. Just switch up the colors to create your own FPIES ribbon. When completed, these ribbons can be attached to keychains, necklaces, or just displayed as is.
    • Make a larger awareness ribbon or wreath that can hang on your front door. You can find some beautiful examples by typing “awareness ribbon door hanger” into a search on Pinterest.

#3. Cook or bake one of your child’s favorite FPIES friendly snacks.
Take some time today to make one of your child’s favorite recipes and then share it with 14 friends or family members. Including a FPIES awareness card or flyer with each snack can be a great way to share FPIES information.

#4. Wear Global FPIES Day awareness gear.
You can purchase Global FPIES Day clothing and accessories from CafePress.com. Proceeds from the profits of these products go to the FPIES Foundation, so just making a purchase helps our efforts to advocate for FPIES families. You could also make your own FPIES gear (check out #2 for some ideas). However you get your gear, though, be sure to wear it proudly on the 14th!

#5. Share the Global FPIES Day button on your blog and social media sites.
This is a great way for partners and medical professionals, as well as families, to get involved. Just click here to get the html code that can be added to your blog or favorite social media site. If you have a child who suffers from FPIES, be sure to share your own inspirational story along with the button.

#6. Share FPIES educational materials with others.
Global FPIES Day is the perfect time to help your friends and family members better understand FPIES and how it effects your child and family. There are lots of great materials available at fpiesday.com. Take some time to go through the site and pick out a few materials that you can send to 14 friends or family via social media, an email, or a letter.


#7. Start a conversation for FPIES awareness.
Get in touch with a local parent group, breastfeeding support group, school, etc. and discuss the possibility of speaking with the group about FPIES. Be sure to let them know whether you are a medical professional or a parent who can speak about your personal experience. Be sure to check out the resources on our site about starting the conversation.

#8. Share posts made by The FPIES Foundation on Facebook and Twitter.
If you haven’t already, like or follow us on Facebook and Twitter. Then check out some of our recent posts and share a few with at least 14 people.

#9. Connect with 14 other families in the FPIES community.
You know firsthand what it is like to live with FPIES. Take some time today to reach out to 14 other families in the FPIES community and share a few words of support and encouragement. That might be as simple as a phone call or a message on social media, but just let them know that they’re not alone.

#10. Send 14 thank you notes.
Reach out to 14 people who have touched the lives of your family and helped you along your FPIES journey. Whether you send them an email, give them a call, or just send a quick note through social media, take time to say thank you for their support.

#11. Share the medical provider packet of FPIES educational materials.
If you are a parent of a child with FPIES, there’s a good chance that you struggled to find a doctor who could correctly diagnosis your little one’s condition. Help current and future FPIES families by reaching out to 14 medical providers and sharing the educational materials listed on fpiesday.com.


If you are a medical provider, Global FPIES Day is an excellent opportunity to learn more about this condition. Check out these 14 articles for professional education and development.

#12. Share the FPIES information packet for schools and day cares.
You can find information about spreading awareness to schools by visiting our website and clicking on the “Schools” tab. The information packet provides excellent resources to educate school and daycare employees.

#13. Promote the FPIES Foundation's YouTube videos.
Subscribe to our channel on YouTube and then select one or two of our videos to share on your social media pages. Just be sure to share with at least 14 people!

#14. Support fundraisers and awareness events for The FPIES Foundation.
You can watch for upcoming events on our website and Facebook page. If there is an upcoming event in your area, invite 14 people to come out and support our efforts to educate and advocate for FPIES families.

How will you find your 14 this Global FPIES Day?

This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation


Sunday, October 2, 2016

The FPIES Foundation Joins with Food Allergy Research & Education In Support of the Teal Pumpkin Project® This Halloween

The FPIES Foundation is pleased to announce its pledge of support for the Teal Pumpkin Project®, a worldwide movement to create a safer, happier Halloween for all children.


The Teal Pumpkin Project, which launched as an international campaign in 2014 by Food Allergy Research & Education (FARE), provides an alternative for kids with food allergies, as well as other children for whom candy is not an option, and keeps Halloween a fun, positive experience. Participating in the campaign is as simple as buying inexpensive non-food treats such as glow sticks or small toys and placing a teal pumpkin on your doorstep to show non-food treats are available. Those who do not have a teal pumpkin can still participate by handing out non-food treats and hanging a poster which can be downloaded for free from the Teal Pumpkin Project website. FARE’s goal in 2016 is to have at least one home on every block in the U.S. with a teal pumpkin.

The FPIES Foundation joins with FARE in spreading awareness of the Teal Pumpkin project through sharing FARE’s free resources for families to print & share on our website blog and social media. 

You can participate by :
  • Providing non-food treats for trick-or-treaters
  • Placing a teal pumpkin in front of your home to show you have non-food treats available
  • Displaying one of FARE’s free printable signs to explain the meaning of your teal pumpkin
  • Spreading the word in your online community. Be sure you’re following FARE on Facebook, Twitter, Instagram and contribute to the conversation using #TealPumpkinProject
  • Download free activities for kids  from FARE

“We are so pleased that The FPIES Foundation is helping to spread awareness about this year’s Teal Pumpkin Project® campaign, as we believe a unified effort will create even greater participation, leading to a more widespread understanding of the severity of food allergies and the impact that this disease has on millions of children,” said Lois A. Witkop, FARE’s chief advancement officer. “Together, we can help ensure a safer, happier Halloween for all.”

For more information, including free printable signs, stickers, posters, flyers and other materials, visit www.tealpumpkinproject.org.


ABOUT FARE
Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE – support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH – enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE – encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit www.foodallergy.org and find us on Twitter @FoodAllergyFacebookYouTube, and Pinterest.


This post was contributed by FARE.  "The TEAL PUMPKIN PROJECT® and the Teal Pumpkin Project® logo are registered trademarks of Food Allergy Research & Education (FARE)." 

Sunday, August 28, 2016

The House That Awareness Built

It was a beautiful afternoon and my girls were so excited-- the long-awaited baking had begun!  Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama.  My eldest tied on her apron, read the recipe, and started measuring. When I reached over to help, she turned to me and smiled sweetly, saying,“I can do it myself this time, mama. I'll be OK.”

As parents, we often find ourselves moving towards milestones--- waiting for that first smile, that first sweet sound of our babies' voices, that first wobbly step. The first tiny move towards independence! As parents of children diagnosed with FPIES, milestones often take on a different meaning. We learn to celebrate the “ordinary moments” as extraordinary milestones-- a first food after months of reactions, a new texture that is finally tolerated, that first shared family meal.

Five incredible years have passed since The FPIES Foundation incorporated. Five years of meeting new families, hearing of heartaches and victories, struggles and successes. Five years of meeting and partnering with compassionate and caring medical professionals, expanding medical education resources, and lighting the flame of awareness in places where FPIES was once unheard of. This has been a monumental five years, and what has made it so monumental has been sharing in this journey and these milestones together.


You were with us when we took our first step on August 31, 2011, launching The FPIES Foundation and debuting our website. You were with us, empowering other families day after day, year after year, to find their voices through our toolbox and resources. You were with us, advocating for other families as you shared your own families' inspiring stories. And you are with us today, ensuring The FPIES Foundation continues to be a home for resources, support, and advocacy. This is the house that awareness built, with an incredibly strong community at the core of its Foundation.


From our beginnings, we have dedicated ourselves to overcoming the challenges of FPIES by offering tools for education, support and advocacy to empower families and the medical community. In the ordinary, daily life with FPIES, we have found extraordinary connections. We look to the future as we continue to invest in education, awareness, research and support for all affected individuals, their families and the medical professionals that serve them. Together, we will continue to be the Voice for all those affected by FPIES worldwide; together, we will continue to take big steps for the smallest of patients. Thank you for helping us build the Foundation together--- yesterday, today and tomorrow!






Tuesday, June 28, 2016

Resources For Kids: Things to do in the Hospital

Things to do in the Hospital
By Zack Skrip 



At the FPIES foundation, we know that hospital visits can be an unfortunate part of our lives. Many of us have hospital bags packed so that we can trundle our little ones off to the hospital as quickly as possible at any time of the day.

When we are fortunate, it’s a quick visit and we are released the same day. But some visits require more time. In fact, sometimes you’ll be in the hospital, and your child will be well enough to want to do things but due to IVs or maybe hospital policy, you’ll be unable to give them the freedom they’d have at home.

My family spent about 5mos in the hospital last year. When it comes to hospital living, sadly, we know what we are talking about. Also, our hospitalizations were spent across the country from where we live, so we didn’t have the freedom to run home and change out books or toys.

These are the tricks we learned last year.

TV
This is where you’ll start. If your child is quite ill, then this is where you’ll stay, too. Kids are naturally attracted to TV and in your frazzled state you’ll appreciate the distraction also.

Try not to let this get out of hand though. As the hours turn into days, TV has a way of making you (and your child) anxious or “antzy.”

Consider making TV a prize that you get to watch, maybe at a certain time of day (“It has to be after 3pm…”), after they finish their food trial, or maybe after a certain amount of time spent doing a different activity.

I’m going to be honest with you. You are going to watch a lot of television. I know you don’t let your kids watch that much at home. You aren’t a bad parent. Hospitals suck. This is what it is.

Reading
Reading can be tough when you just get to the hospital, especially depending on how sick everyone is, but over time, it’ll provide a very pleasant distraction from the environment and a reason to stop watching TV.

The tough thing about books can be having them with you. Books take up a lot of space, and kid’s books are by nature short--so you need a lot of them. “Kindle!” you all say. Well, yes. There are Kindle versions of kids books, but unless you are really committed to the platform, I’m assuming most of your kids book will be the old fashioned paper kind.

So, unless you want to keep a stack separate, ready to grab on your way out the door, it’s more than likely that you won’t bring very many books with you (if any).

Here’s what you can do:

Buy a few children’s book compendiums. These large, convenient volumes have many children’s books published together. This way you can grab one or two and be set for a short stay. The only downfall, is that they are heavy, and therefore hard to read lying down. Here are our favorites:


You can buy most of these used, and that could save you a little bit of money. Hospital stays aside, these volumes contain many of the best stories, so they’re good to have anyway.

         YouTube
You would think this would be in the same category as TV, but I’ve learned how to convince myself that it isn’t, if only because of the educational value we’ve gotten from it.

As you read through stories or go about your day, think of things that your child might not have ever been exposed to, and then use YouTube to show them what it’s like.

For instance, we were working on a sticker sheet that had dinosaurs and volcano's. I realized my son had never seen real lava before so we spent ten minutes looking at lava flows on YouTube. Many of the YouTubers helpfully put things like pop-cans and iPhones in the way of the lava so we could see them explode into flames.

You have to take your education where you can get it.

Aside from nature, there are all sorts of other fun things to use YouTube for. For instance, my son learned all of the instruments in the orchestra over one hospital stay. We’d search for classical music concerts and then name the instruments. (If you’d like to introduce your child to classical music, I’d suggest you start here. These guys are hilarious.)

Crafts
Crafts can provide a fun way to spend some time. They allow your child to use their fine motor skills, get creative, and still stay in bed (if that’s required).

Coloring is the easiest thing to do, and most nursing stations have crayons and coloring sheets available, just ask for them.

My son and I had fun making different paper airplanes (again, ask for some blank copy paper from the nursing station). We’d watch the instructions (thank you, YouTube) and then try it out on our own. You can see which plane goes the fastest, farthest, loops the best, etc.

Another option is to make finger puppets and then play out your child’s favorite fairy tales or stories. Don’t overthink this. One time I took a couple of non-latex gloves, cut off the fingertips, drew different smiles on them and then acted out Hansel and Gretel.

Of course, Pinterest would have a large offering of more creative options, but in the moment, the glove people worked out just fine (but make sure they don’t get swallowed).

Fun Toys
Toys from home can bring a lot of comfort to your child, as it will bring some continuity to what can be a very scary experience. Whether it’s a few favorite stuffed animals or games, bring a couple of toys with you.

If your child is older, or going to be in-patient for a longer period of time, consider some sort of building toy, like Duplos or Magna Tiles. We love the latter because they pack flat and can be wiped down with disinfectant when they take a tumble to the floor. These tiles can be a bit expensive, but if you watch for deals, you can get them discounted.

Remember that most hospitals have a play room that you can usually borrow toys from. So don’t feel like you have to pack something from home. The best part is that once your child is tired of that toy, the staff will pick it up and drop off a different one.

Hospital Resources
Ask your nurse or the floor social worker what other resources are available. Depending on the hospital, you may find any number of the below are offered:


  • Music Therapy
  • Therapy Dogs
  • Hospital Library
  • Children’s toy room


Children’s hospitals especially will have other resources to make your stay as positive as it can be.
Conclusion

These were our favorite ways to spend time in the hospital. What have you found to be the most helpful or comforting while spending time in-patient? Let us know in the comments.


This post written by and contributed to The FPIES Foundation by Zack Skrip. Between working for three different major pharmaceutical companies and being a parent of a child with a chronic illness, Zack knows that accurate healthcare information is vital. He’s a freelance medical copy and business writer, and you can email him at zack@zsmarketing.net

Monday, October 26, 2015

FPIES Trends and Insights from the Patient Registry

FPIES Trends and Insights: 
Caregiver/Patient Reported Data from the Global Patient Registry 
By Hilary Lagerwey 

For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis.

First of all, we want to say a big thank you to those who have already filled out the survey with valuable information!  There are several good studies out there describing what FPIES looks like, and our goal is to supplement that research with up to date information gathered from an even larger pool of families that we are able to reach using this tool. We hope that this information proves immediately valuable to families and doctors who are managing this diagnosis on a daily basis. We also hope to provide some insights to researchers that might prompt further study.

Anyone who fills out the survey has access to all of the cumulative data so feel free to browse and analyze for yourself, but today, in honor of Global FPIES Day this month (Oct.14th!) we thought we would share some of the insights we’ve gleaned so far. We recognize that since we are collecting data by voluntary responses some of our information may look skewed as compared to a more random sample; however we know that these results are important to share and that they represent a significant portion of FPIES families.


If you haven’t filled out the survey yet, please do so! The more data we have the more we can learn. The more information we can give to doctors and researchers, the more we can advance research to benefit all families living with FPIES.  Here is a look at what our data says about some frequently asked questions:


Do FPIES symptoms typically appear with the introduction of solid foods and formula or is it possible to react through breast milk?

57.4% of survey respondents reported exclusive breastfeeding when symptoms began.

Is FPIES typically outgrown in early childhood?

Out of patients 3 or older in our survey data, 15.8% report outgrowing acute reactions. 1 patient reported is under 3 and reported already outgrowing acute reactions. Several patients well into their elementary school years state that they still have not outgrown acute reactions.

*Also out of patients 3 or older, 15.8% report outgrowing chronic reactions.

50% of those who report outgrowing acute reactions report still experiencing GI symptoms with previously reactive foods.

Do most kids only react to one or a few foods?

Out of those who report projectile vomiting with reactions, 51.9% stated this occurs with only 1 or 2 triggers vs. 48.1% who stated they experience projectile vomiting with more than 2 triggers.

26.9 report projectile vomiting with 5 or more triggers.

What symptoms are common with reactions?

81.3% report projectile vomiting
65.6% report diarrhea
48.4% report visible and/or occult blood with stool


Thank you to FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey for compiling this survey data. 

Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice 

Tuesday, September 22, 2015

Building FPIES Awareness through Fundraising and Events

Over the last year we have been inspired by the impact of your unique talents and hard work as you continue building awareness to FPIES.   As we approach our 2nd annual Global Day, we wish to share some of these events with everyone, in hopes to inspire you, that you too can make a difference.  “Our shoes may be small but our steps will be BIG!”

FPIES families have always been creative, including in how they raise awareness and fund-raise! We have had several moms using  Jamberry fundraisers, and even a couple of these moms designed the nail wraps themselves to feature FPIES awareness art. Awareness from fingers to toes! Other moms have designed T-shirts and other awareness gear to raise funds to further FPIES education and awareness. Their creativity has helped fund programs to educate medical professionals about FPIES. We want to give special shout-outs to Jessie Ipson Richens, Kate Hutchens, Crystal Lentz, Brandi of Glam Tots, Rosie's Creations, and Half Pint Threads!

Restaurants have joined in the cause, sponsoring family nights and awareness days where they donate a certain percentage of sales to The FPIES Foundation. We were touched to see photos from Jersey Mike's Subs-- a visual reminder of how communities are really joining in the cause and reaching out to support  FPIES awareness. The families initiating these fundraisers and the restaurants partnering in the cause have helped to fund programs providing resources and support to families worldwide. Special recognition for Luca's family for all of their support!

In every fundraiser and in every awareness event, families put their own unique stamp on the day.  Just as each child is unique, each family-organized event has its own special style. The Fangman Family, for instance, raises awareness at Drag Races and Mud Runs!  Samantha Fangman shares, “Our daughter, Josie, has FPIES. My husband had decals made for his race-car with the FPIES logo. We have brochures printed that we hand out at all our races. We were amazed how many people came up and asked us what FPIES and The FPIES Foundation was at our first race. We’ve handed out many more brochures than we anticipated and are thrilled about it!!! We are doing what we can to get the word out!!“


If you are thinking about starting your own awareness event or fundraiser for the FPIES Foundation, we hope that you have found inspiration in the stories of the families highlighted above--- we certainly are inspired by all of them, and all of you, everyday as we continue working to fulfill the FPIES Foundation's mission of education, support and advocacy for all those affected by FPIES, worldwide. 


This post was written by the Executive Board of The FPIES Foundation 

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.

This post was written by the Executive Board of The FPIES Foundation