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.
TheTeal 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
Spreading
the word in your online community. Be sure you’re following FARE on Facebook, Twitter, Instagram and contribute to the
conversation using #TealPumpkinProject
“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 @FoodAllergy, Facebook, YouTube, 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)."
Here at the FPIES Foundation, we are always on the
lookout for other organizations that can help your child and family through the
daily struggles and challenges of FPIES. We are therefore delighted to announce that we have recently partnered with the Children’sMedical Nutrition Alliance (CMNuA). To help you understand more about what this
wonderful organization does and how they can help families dealing with FPIES,
we invited CMNuA to tell us a little about themselves.
What
is the mission of the Children's Medical Nutrition Alliance?
Our mission is to improve the lives of every
patient and family dealing with digestive disorders, diseases, and other medical
conditions that require medical foods and formulas to survive and thrive. CMNuA
creates that positive change through direct support, information, education,
advocacy, and community.
Who
does CMNuA help?
We help children—and their families—who have any
severe food allergy, disease, or inborn error of metabolism that may require
them to rely on medical nutrition to some degree. It doesn’t matter if your
child has FPIES or PKU, we’re here to support and advocate for you!
What
support does CMNuA offer to families with children who need medical nutrition?
CMNuA offers several levels of assistance to
affected children and their families, including:
The Fund for Food and Families,
which provides each qualifying minor up to ten cases of formula per year—free
of charge! To qualify, the child must have a physician-documented need for
medical nutrition, be unable to pay for medical nutrition, and must not receive
reimbursement from any third-party payers.
Additionally, those same
individuals and their families may apply for and receive diapers and assistance
with non-covered medically related expenses. Those expenses can include travel
costs when parents or guardians need to take their affected child out of town for
treatment or testing.
We also provide a complete how-to
guide and support materials for those families wishing to hold local
fundraisers. All of the donations received are run through CMNuA and are 100%
tax deductible to the fullest extent allowed by law. The
funds from their fundraiser are earmarked for the family’s exclusive use and
applied toward the purchase of formula on their behalf.
Finally, CMNuA partners with
sister nonprofits to do webinars and events that provide resources, support,
and information. We strive to focus on overarching quality of life issues for
these families in six key areas: social, relational, institutional, financial,
nutritional and psychological.
Can
you tell us about one of the children or families who have benefited from
CMNuA's support?
Savannah is a beautiful 2.5-year-old little girl
with FPIES. After the sudden death of her mother, Savannah’s family struggled
to pay for the expensive medical formula she needs to survive and thrive. At
that time, she had NO safe foods and needed medical formula exclusively to
survive. As of August 23, 2016, she only has three safe foods in addition to
Neocate infant formula—carrots, olive oil, and prunes.
Through The Fund, we were able to supply Savannah
and her family with 10 cases of the formula she needs. Additionally, through a fundraiser,
we raised an additional $7,500 for the family. We connected them with Nutrica
and worked with Nutricia’s assistance program to get the family formula at a
substantially reduced price. As a result, the family has not had to buy formula
since August of 2015 and has enough money in an account with Nutricia to cover
Savannah’s formula through early November 2016. You can read more on Savanna’s story on CMNuA's website.
What
advice or message would you most like to share with families struggling with
FPIES?
There IS HOPE! You are your child’s
best advocate and you are not alone. We are here to help you every step of the
way with direct support, a listening ear, and referrals to resources and organizations,
like the FPIES Foundation, that have the ground level, detailed information
about your child’s condition.
CMNuA exists to build a coalition of
nonprofits, doctors, parents, researchers, and advocates to support all
families with children who may need medical nutrition. From the moment that
your doctor suspects that your child may have FPIES, or perhaps another non-IgE
mediated allergy, CMNuA is here to work with organizations like the FPIES
foundation, IFPIES Association, various social media support groups, medical
nutrition companies, and others to help make your journey as positive as
possible.
What
are the first steps an FPIES family struggling to pay for formula should take?
Contact your insurance company! Many families
assume that their insurance won’t cover formula and that an appeal will be
denied. In many instances that may not be the case.
Then contact CMNuA! We can provide you with a list
of resources for discounted formula, advise you on your options with respect to
government assistance programs processes, and share information about mandates
in your particular state with respect to insurance coverage.
Additionally, our Fund for Food and Families is a
great resource for parents who need help with medical nutrition and often we
can ship formula within days of receiving a completed and approved application!
You can learn more about the Fund for Food and Families and apply online here: http://cmnua.org/fund-food-families.
How
can a family impact legislation?
Sign up as a CMNuA advocate and join our mailing
list! We work closely with our sister organization, Children’s MAGIC US,
lobbying for mandated insurance coverage of medical nutrition for all children
who may need it on both the state and federal levels!
To date, 20 states have some type of legislation on
the books mandating medical nutrition coverage, though some are limited to
inborne errors of metabolism or age restricted. We continue fighting to change
that! Exciting things are happening at the federal level, too, and we are in
the forefront of that fight.
Both CMNuA and our sister organization, Children’s
MAGIC US, rely heavily on parent advocates like you to write letters,
contact your representatives in person and by phone, share your stories, raise
public awareness, and even testify at legislative hearings on the state and
local level. Each year, we strategically choose states in which the
climate is most conducive to passing broad effective insurance mandates and
legislation. We need as many parents behind us as possible, sharing their
stories and showing lawmakers why this legislation needs
to be passed.
You can sign up as a CMNuA advocate and join the mailing list here.
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
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!
