I am so grateful for the amazing work that the FPIES Foundation is doing for FPIES families! This organization was our saving grace when my son had his first acute reactions to baby rice cereal at almost 6 months old. Our pediatrician at the time could not figure out why my son was experiencing poor weight gain starting at 4 months old followed by profuse vomiting to bile multiple times with in a few weeks. I am even a dietitian experienced at working with patients with IgE food allergies, but my son’s reactions had me completely baffled (we didn’t unfortunately learn about FPIES in college and I had never seen a patient with it). So after days of scouring the internet (and sobbing and praying) for a diagnosis I came across the FPIES Foundation’s website. I reached out to their dietitians and received amazing support and guidance. I finally felt like I had an understanding of what my son was going through. I presented my theory to the pediatrician and although our usual practitioner didn’t think it was possible she did run the idea by her colleagues and one thankfully agreed with the diagnosis. My prayers had been answered as I finally had the information I needed to move forward and help my son! I completed the FPIES Foundation’s continuing education course for dietitians and to this day continue to use all the wonderful resources for parents! I feel like they are truly my family’s partner on our FPIES journey! Thank you FPIES Foundation for being there for our family during some of the hardest days.
The work this group does is truly life changing. I trust the information they give, rely on the support they provide and love life love the launch of the research registry! Keep up the amazing work. Thanks to the info they gave me I was able to get my son diagnosed a lot sooner than if I didn't have them on my side.
I like everything about this foundation. There are other foundations that tend to have tunnel vision and don't educate the people on the fact that FPIES is very much a spectrum syndrome. Some of the other organizations tend to focus on their own personal experience with FPIES and don't seem to accept that children may exhibit slightly different symptoms. I also like how this foundation is like a family support system. I love that they don't claim to be the FIRST and ONLY foundation because their number one goal is to help spread awareness. They willingly share all information they have and don't charge outrageous fees to learn from educational seminars they hold. I feel completely comfortable donating to this organization and I feel that every penny truly helps the cause. They are a great support system and a wonderful educational organization.
My family first became aware of the FPIES Foundation through our pediatric nutritionist at CHOP.
After many years of misdiagnosis we were happy to have a diagnosis, but were completely overwhelmed with questions we had no answers for. Through the foundation I have learned how to care for my daughter, how to cook for her, how to support her and how to get support for myself. I'm glad to have the opportunity to volunteer for the foundation that helped us through the hard times and even happier to be volunteering with an awesome team of other parents who give so much of their time to help newly diagnosed kids and their families. FPIES is a complex disease that takes up much of a parents time and money, so it is especially touching that the foundation is completely ran by other parent volunteers who give up some of their free time to extend their hand to another family.
Working with The FPIES Foundation has been an incredibly empowering and intense experience--- we hear from families, medical professionals, and members of their communities about the impact our organization and resources have made for them daily. We hear stories from struggling families that make me want to cry alongside them and success stories that make me want to jump for joy with them. Everyday I am reminded why we do the work that we do--- we will always strive to provide that network of caring, providing the support families and medical professionals need to care for the smallest of patients, those children affect by FPIES. Personally and professionally, I have been forever changed by all of these families and professionals that I am so fortunate to be able to serve and by the amazing parents I work with making up this organization.
The FPIES Foundation is a place for support, tools, resources, and empowerment for families and the medical community alike. Everyday we hear from families in how much this information is helping them thrive. The Foundation was started by families with families in mind. We are working to ensure that all parents of children living with FPIES can spend their time caring for their child, instead of struggling for information, diagnosis, resources and support. No family should journey alone
I was referred to the FPIES Foundation nearly one year ago. Both of my children have FPIES ...not just the acute vomit to shock symptoms, but the more "gray area" reactions. Severe intolerance to just about every food protein.
We have been fighting this battle alone for 5 years. Eighteen medical specialists, nutritionists, pediatricians, lactation consultants, etc. have all been stumped by the day to day struggle we endure as a family finding safe ways to nourish our children. Even giving our infants a bath was enough to trigger a reaction. With no understanding and no help, it has been a very isolating road.
Being referred to the FPIES Foundation was a lifesaver for our children. Reading other parent's stories and relating to their journey ...for the first time ever I was not alone! Having the "toolbox" of letters to schools, physicians, medical articles, and guides to day to day survival of FPIES has made a WORLD OF DIFFERENCE. We have finally connected with a medical team to help us navigate this crazy journey of life with older FPIES children. We also have joined the foundation to organize FAMILY MEETUPS ... our journey with FPIES can be so isolating ...it is wonderful to connect with others who truly "get it".
The FPIES Foundation is providing much needed information and awareness of this rare disorder. Knowledge is power, and with the FPIES FOUNDATION ...AWARENESS IS ACTION!
The FPIES Foundation has been extremely helpful in spreading awareness to families and medical providers to help our children with this debilitating syndrome. The literature and tools approved from the Medical Board, have helped us in teaching our sons medical providers and school staff about FPIES. I don't know what I would have done without the help from this foundation to lead the path to better health and wellbeing for my child and our family. Thank YOU!!!
Has been a vital role for a friend in dealing with the day to day struggles her family goes through for their son Chase.
Helpful, but.... The FPIES Foundation has some helpful information that got us started after my daughter was diagnosed with FPIES last year. It really helped my wife to read all the stories of other families struggling with this. They ask for contributions in a lot of different ways and sell merchandise -- I just want to know specifically what it funds other than overhead. They had a big fundraiser last week but never said how much they raised or what particular projects its going to. The other FPIES organization is funding research, conferences, materials that go to all doctors, getting the medical code passed, etc. I hesitated to write this review because I want to put my full support behind this group, but I think people should know exactly how their donations are spent.
We have a grand son with FPIES. This organization has been a blessing to him, Chase, and his family. FPIES is difficult to diagnose and many doctors have not even heard of this health issue. It is severe reaction to almost all foods and there is no way to find out which food will set off a reaction except to try the food and see. This makes life so difficult on both the child and his/her family. The FPIES foundation provides information, support, and inspirational stories which all help the family. Please support this important foundation!
A great source of information and support for families struggling with FPIES.
The FPIES Foundation was the best place for me to find information that helped us get our son diagnosed with FPIES. Our first doctor never even heard of it, but after reading parent testimonials we knew what questions to start asking. They also helped guide us through the management of our sons disease while we were waiting for the official word from the doctors. We would have been lost a year ago without the FPIES Foundation. Thank you!
The FPIES Foundation is a fantastic organization. They aim to arm families with unbiased information so as to empower the parents to find the path that best helps their child. FPIES families volunteer their time to run the foundation. And a panel of well respected physicians lend their expertise to ensure information gleaned from the site is based on sound medical ideas.
I feel it is also important to note that the FPIES foundation runs solely on fundraisers and donations; they are not sponsored by any corporate entity. Such sponsorship would easily allow information to be skewed and send business the way of said company rather than give the best information, regardless of it helping/not helping a corporation.
Their goal is to help FPIES families navigate the winding road with this disease and I believe they are doing just that.