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!
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.
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.
