Sunday, September 18, 2016

Children’s Medical Nutrition Alliance

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:
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

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!

Monday, July 11, 2016

When Life Hits the Fan

When Life Hits the Fan
A guest post by Honor Genetski

I've been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it's happening I obviously just want it all to go away. 

It started a few months ago when Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she'd be back to her normal cheery self. Instead her entire system unraveled and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what's happening. This time after lab work ruled out a few common bacteria and parasites, I was told by her pediatrician that she would defer to me since I was the expert on my daughter's health. I sat with these words for a minute unsure if that was actually a good thing in this case. 

There really isn't a net to catch this child when she falls. I hold her on the way down and we fall together. 

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It's allowing yourself to be right where you are with the tools you've got.

And rock-bottom serves its purpose in that it's a place to take inventory on what is and isn't working, and to resource for the next steps.

The following ideas are some of my most tried and true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

~ Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

~ Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

~ Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don't expect them to know until you verbalize it.

~ Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

~ Connect with resources that align with your values – make sure it’s a right fit. If it isn't, allow yourself to explore other options. 

~ Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water. 

~ Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.

Honor is a Marriage and Family Therapist, and mom to a child with FPIES.  Honor follows her intuition and hope in the quest for healing on Therapist Mama. where this blog post originally appeared.  It is shared here with permission.