Power of the PIN

In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform company.  Last year, Patient Crossroads underwent a rebranding to become AltaVoice.  Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the voice of children and families living with FPIES to help researchers and potential drug developers find better treatments, faster.

What is AltaVoice?

AltaVoice, formally Patient Crossroads, is a patient-centered data company that optimizes the search for better treatments for diseases.  They build and host Patient Insights Networks (PINs). PINs are ideal for collecting, curating and sharing patient and clinician reported health data. Altavoice works with drug developers, advocacy organizations, like The FPIES Foundation, and academic researchers, uniting them with patients to help improve lives.

What is a PIN?

A PIN stands for Patients Insights Network.  An AltaVoice PIN is more powerful than a traditional registry. It is an interactive, online platform for surveying patients, uploading medical records, tracking health outcomes and sharing de-identified disease data. Additionally, unlike typical clinician-driven registries, PINs are patient powered. The AltaVoice PINs make it easy for families to share their child’s experience, contribute medical data and maintain their privacy while being connected to the latest research, treatment and disease education opportunities.

Sharing Data & Improving Care

The AltaVoice PIN model was built with patients at the center, in control of their data. They believe strongly that advances are made faster when data collection is standardized and advocacy groups, such as ours, include the data in a global network, among other rare diseases that may share commonalities.

We share AltaVoices goals to encourage the sharing of de-identified data and studying findings to help patients learn how others manage similar health challenges. Sharing data also helps quantify the patient journey and build a stronger case for improving care.

Your Privacy

AltaVoice remains passionate about using their expertise to save time, lower costs and improve patients’ lives in a protected environment. Protecting patient data while providing broad access to health information is the cornerstone of their system design. AltaVoice rigorously manages and operates all systems to comply with HIPAA, FISMA and data and patient protection laws.

Inherited & Rare Diseases

AltaVoice has also partnered with Invitae to create new offerings to advance research and access to care for patient with inherited and rare diseases.  While FPIES is not known to be a genetic condition, this merger enables our registry to be open to collecting the data needed for investigating FPIES as a genetic condition.  We are excited for these possibilities under our free FPIES Patient Registry. 

The AltaVoice PIN provide patients, The FPIES Foundation, and research groups with a platform where they direct how, when, and with whom to share their clinical, and in the future, genetic, information to benefit their children and families and further research efforts for FPIES.

Learn more about AltaVoice here: https://www.altavoice.com/solutions/solutions-for-patients-and-families

Register on the FPIES Registry here: www.fpiesregistry.com

Global FPIES Day 2016 Impact: How we made a difference

It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together.

Tools that Build Bridges

This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families and spread awareness. They can be found on the Global FPIES Day webpage.

1. We released 9 video presentations for FPIES families. The entire playlist can be seen here.
2. We debuted our new Online Learning Library, where you can find multimedia resources for education and awareness.
3. We offered multilingual resources to reach out to a wider audience and help as many families struggling with FPIES as possible.
4. We focused on nutrition with the release of our nutrition worksheets, which can be found on the Global FPIES Day page and the Online Learning Library. We also talked about the Nutrition Webinar, which was held on October 25^th.
5. We partnered with The Mighty, an online community for people struggling with serious challenges, such as health or mental illnesses. Check out this blog post contributed by The Mighty for more information. We also used Facebook to ask you “What’s one secret you wish others knew about caring for someone with FPIES?” The Mighty used your answers to put together a wonderful blog post, 19 Secrets Families With FPIES Wish Others Knew.
6. We hosted an FPIES Twitter chat with Foundation volunteer Victoria Warren and MAB member Dr. Sakina Bajowala about the ins and outs of emergency care. We’ll be posting a summary here on the blog, so watch for that soon!
   

Families

And of course, many FPIES families found their own ways to build bridges and spread awareness. As in previous years, some created and shared a “I am the voice” picture frame. You can view the online album here.

Others took some time on Global Day to post about FPIES on Facebook, to change their profile picture to the FPIES day button or picture frame, and some even held their own events. Mom and LuLaRoe Consultant put together a family fundraiser, while the Litteral family handed out flyers featuring their “I am the voice” picture frame.

We want to thank them and all the families who reached out to others and found ways to talk about FPIES on Global Day!

Partners

We also want to give a shout-out to our partner organizations who helped spread the word by sharing information about FPIES and Global FPIES Day on their social media accounts and websites. Sarah’s FPIESClubhouse put on a great awareness campaign, including some Webkinz giveaways.

Several of our partners, including CMNuA, No Biggie Bunch, and Global Genes, tweeted or retweeted about Global Day. You can see those by searching for GlobalFPIESDay on Twitter. Others posted or shared our posts on Facebook, including AllergyFree, Feeding Tube Awareness, and My Munch Bug. You can see those by searching for Global FPIES Day on Facebook.

There were many, many other partners who got involved on Global Day and we are so grateful for all the support!

Presenters

Finally, we want to say thank you to the amazing presenters who created the online videos. Your contributions were a large part of this year’s Global FPIES Day and it wouldn’t have been the same without you!

• Kyle Brown, CEO of Patient Crossroads, for explaining the importance of the FPIES Global Patient Registry in “FPIES at a Crossroads.”
• Claudine Crangle, author of “Woolfred Cannot Eat Dandelions – FPIES,” for reading her delightful story for us.
• Dr. Jeanelle Boyer for telling us about her work in “FPIES and the Microbiome: A research update from Dr. Jeanelle Boyer.”
• Dr. Amana Nasir for giving us some very useful tips in “Preparing your child for GI tests and procedures.”
• Honor Genetski, MFT, for reminding us to take care of ourselves as well as our children in “Self-Care for Parents: Reflections for Caregivers.”
• Joy Meyer, Co-Director of The FPIES Foundation, for giving us a new recipe in “Making Hemp Milk.”
• Amanda LeFew, FPIES Foundation Co-Founder and Co-Executive Director, for helping us with our next awareness event in “Creating an FPIES Resource Table for Your Awareness Events” and for helping us foster coping skills in our children in “Creating Calm.”
• The Children's Medical Nutrition Alliance for teaching us about “Navigating Insurance and Medical Nutrition.”

To all who participated in Global FPIES Day 2016, you made a difference! We know that as we take these tools and move forward, we will continue to build bridges and find ways to help children and families struggling with FPIES.

We’d love to hear how you spent Global Day this year, so please comment below and let us know!

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.

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

Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.

A rare disease is defined as “rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. ” (Rare Disease Day)  

As we honor this day, we encourage you to create a conversation about rare diseases:

• Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
• Share your story with your local news and on our Inspiring Families page. 
•           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
• Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 

• Join hands
  

• Create a social media profile picture frame  and share it with us for our social media album

• Tell your story on Rare Disease Day and Global Genes  to be published.  

Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or RareDiseaseday.org pages to get informed and download their RDD materials.

This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation. 

Global Day Impact in 2015

Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the healthcare providers who serve them.  

Together, we:

• Provided hope.  
• Illustrated what an acute FPIES reaction looks like, in the stages of dehydration and shock.  
• Increased awareness with an “Overview of FPIES” for families, pediatric professionals, caregivers, teachers, and our communities.  
• Explored ways to communicate with our children regarding special food needs and how we can Redefine Differences. 
• Discussed strategies to nourish children affected by FPIES and their families, utilizing tools for coping and managing the stress of living with FPIES.  
• Prepared families with checklists for school, travel, recipe building and more! 
• Empowered families in the kitchen to learn more about “Cooking with Food Allergies.” 
• Shared your “Voice of Education” in our “Global Day” social media album  
• Inspired more families to share their stories and their experiences with this life-altering diagnosis. 

We ended the month of awareness with being honored with one of the first Top-Rated Awards of 2015 from GreatNonprofits! We were so touched and appreciative to read all of your reviews!  The reviews by volunteers, families, supporters and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community, recognition we are so very honored to receive.**

**While the Top-Rated Awards ran through the end of October, The Foundation was part of the inaugural group to qualify for the year. In addition, we’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years. Look for this near the holidays.

Together, we were all the Voice in raising awareness, while fostering advocacy, education and support for FPIES this Global FPIES Day. Thank you for connecting with us, across barriers of land, ocean and language, in order to better the lives of those affected by FPIES, worldwide.

As we head into the Holiday season, it is our hope that awareness and education highlighted during Global Day can continue to start conversations, enable inclusion, and help keep our little ones safe and thriving through the challenges of this year and those to come. 

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

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 2^nd 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 

200 Free Custom Wristband Contest!

Raise Awareness to FPIES with custom wristbands! With food allergy and FPIES allergy education and awareness days approaching, wristbands can be a great way to wear your awareness.

We have teamed up with WristbandBros.com to give one lucky family living with FPIES a chance to win 200 free wristbands and a free design consultation! Simply follow this link for all the details from Sean Mulligan of Wristband Bros.: 200 Free Custom Wristband Contest!

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:

-How do I become an empowered patient?

-Advocating on Capitol Hill

-Is genetic testing an option?

-Telling your story to raise awareness

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: http://giverare.razoo.com/story/Fpies-Foundation 

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.

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FPIES Events and Fundraising Opportunities

Global FPIES Day is fast approaching, set for October 14th, 2014. We are so excited for this huge awareness raising opportunity and we are also so excited that so many FPIES Families are getting involved!

There are quite a few events and fundraising opportunities right now and we thought it would be helpful to highlight them here:

FPIES Fashion!

Thanks to FPIES mom, Jessie Ipson Richens! She raised funds and awareness through her very successful TFund Global FPIES Day t-shirt & Jamberry Nail Wrap sales!  This sale was limited to enable shipments to be received before Global FPIES Day.  If you ordered one of these products, expect shipment soon! 

  

Cafe Press FPIES Foundation Awareness Shop: Did you miss the first Global FPIES Day shirt sale? No need to worry-- the Foundation has you covered! Our Cafe Press Foundation Shop has something new in the window! Awareness gear to wear and accessories for daily living, all honoring Global FPIES Day with unique designs. From magnets to drinkware to clothing for all sizes, there are countless ways to show your support for the day! 20% of sales are donated to The FPIES Foundation!

Rosie’s Creations supports Global FPIES Day! Items made by Rosie are available for sale and a portion of all sales over $10 will be donated to The FPIES Foundation from Sept.5, 2014 until October 14th, 2014.

Thirty-one Fundraiser for FPIES 2014.  FPIES mom, Elizabeth Wagner, is hosting a Thirty-one party from October 1, 2014 – October 14, 2014 to help raise awareness about FPIES. 80% of the profits will be donated to the FPIES Foundation and there will be a raffle at the end for those who have joined the group.  More information can be found in the facebook group created for this event.

Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from our 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.

Flowers for FPIES!

Fall is here but Spring is in the air! Keep warm weather wishes close by getting your flower bulbs from Flower Power now! For every purchase made on this site, Flower Power Fundraising will give 50% back to The FPIES Foundation. Sale ends October 15th.

Holiday Shopping for a Cause!

The FPIES Foundation will once more be selling coupon books for Bon Ton's Community Days sales event (only November 14 and 15, online or in store!). Coupon book savings total $500+ per book and at only $5 each, this bargain is incredible! If you are local to southwestern MA, you can pick up your book in person by contacting contact@thefpiesfoundation.org or you can order a booklet online and have it shipped to you for free****:

**** Add the booklet to your shopping cart and when you check out, enter the Charity State as “MA,” City as “Westfield,” and Charity as “The FPIES Foundation.” Coupon books can be used nationwide at the following stores: Bon Ton, Bergner's, Boston Store, Carson's, Herberger's, and Younker's.

For direct donations to the FPIES Foundation in honor of Global FPIES Day:

http://fpiesfoundation.org/donate/

Ongoing, COST FREE Fundraisers that support our initiatives:

There are also plenty of FREE ways to raise awareness and support the FPIES Foundation.

Change your profile picture to the Global FPIES Day awareness ribbon!

Use ‘Goodsearch’ as your search engine and automatically raise money for the FPIES Foundation:

Use GoodShop to find savings and shop at all of your favorite stores-- online or in town!

Register and do your online shopping with iGIVE! Fall is here and we're looking forward to the holidays. What better time to help The FPIES Foundation just by sharing. Tell your friends, even friends who support some other cause or charity. Each person who joins iGive in October for the first time by joining under this link: http://www.iGive.com/html/tellafriend.cfm can mean $5 automatically donated to The FPIES Foundation... no purchase necessary! All they need to do is try the iGive Button through 1/15/15.

Every day more people learn about FPIES, but every day more children are diagnosed with it. Together we can make a change. Small amounts add up fast.

Some examples of where the money goes:

‘75’ dollars will send 100 doctors FPIES information packets

‘50’ dollars will get 25 newly diagnosed FPIES families vital information to help them navigate this challenging diagnosis.

'25' dollars will distribute rack cards to at least 50 allergy fair attendees.

Additional funds are allocated in varying amounts to larger scale education, outreach, and scientific meeting/research initiatives.

Together we can all ‘Be the Voice’ for our children and others living with FPIES.

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