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20 Reviews
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August 10, 2014

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August 10, 2014

I first discovered The FPIES Foundation through a google search of my sons symptoms. He was 2 years old, failing to thrive, and was constantly in the hospital and doctors offices. He was very sick, and no one could figure out why. Once I found the Foundations website, and learned about FPIES, I was able to help the doctors find the resources that they needed to learn about FPIES, and help my son. Our journey with FPIES has been long, but I am so grateful for the Foundation every step of the way. In April, my son got very ill from a reaction to his only safe food, a formula, and was hospitalized most of the month. Our doctors were able to connect to The FPIES Foundations Medical Advisory Board, and talk to the front runners in FPIES knowledge and research, so that they would best know how to help my son. I will forever grateful to The FPIES Foundation. All of their hard work in research, education, support, and outreach literally saved my sons life. The support system they have created in this world of rare disease is unprecedented, and makes me feel like I am not fighting a losing battle anymore. The board of directors are amazing, and never stop advocating for FPIES, and helping parents learn how to effectively advocate for their children so that they can receive the help and proper care that they need. Through their tireless efforts, I feel confident that FPIES will be better understood, and better known in the medical community and beyond, and that other children will be able to receive proper medical care down the road, and not have to go through what my son had to go through to receive his diagnosis.

Ways to make it better...

If I had to make changes to this organization, I would...

None. This organization is incredible.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

August 6, 2014

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August 6, 2014

Can't say enough positive things about the FPIES Foundation. They've got a solid mission and are a great resource for those of us who have a child suffering from FPIES. Our son was diagnosed as an infant, more than two years ago, and it's been a long journey. The FPIES Foundation has provided support, education, encouragement and friendship.

Also, I have to disagree with the reviewer who said he didn't know where his donations were going. Whenever there's a fundraiser the foundation makes it very clear to donors in how they plan to use that money... and it's many of the same things he mentioned. It's not easy running a successful volunteer non-profit organization... the Board of Directors and all the volunteers at the FPIES Foundation do a superb job.

Ways to make it better...

If I had to make changes to this organization, I would...

Provide them with government funding to support the amazing work they are doing with this rare disease and it's lack of diagnosis. There are far too many physicians who don't know about, and certainly don't understand, FPIES.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

August 6, 2014

more


1 previous review
November 13, 2013

We would be lost with out The FPIES Foundation! Our son was diagnosed with FPIES at 7 months old and we were scared and overwhelmed. I reached out to a parent volunteer and was immediately given helpf... more

August 6, 2014

Our son was diagnosed with FPIES at 7 months old. We were lost, scared and confused. The FPIES Foundation made our struggle so much less complicated. It was our safety net. I've become a parent volunteer to help the Foundation continue it's mission of support, education and advocacy.

Ways to make it better...

If I had to make changes to this organization, I would...

No changes needed.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

November 13, 2013

We would be lost with out The FPIES Foundation! Our son was diagnosed with FPIES at 7 months old and we were scared and overwhelmed. I reached out to a parent volunteer and was immediately given helpful advice and support on where to begin with our son and this crazy GI food allergy syndrome. We cannot thank The FPIES Foundation enough for their advocacy, educational information, materials and support during this difficult time for our family. We now have an excellent medical team for our son and he's making slow but steady progress.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 6, 2014

more

August 6, 2014

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.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

September 13, 2013
4 people found this review helpful

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September 13, 2013
4 people found this review helpful

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.

Ways to make it better...

If I had to make changes to this organization, I would...

None. The only thing I would change is to make the organization more widely known, but I'm certain they are working on that themselves.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

September 11, 2013

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September 11, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

None. This foundation has provided my family with the information and support we need to continue winning our battle with FPIES.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 11, 2013

more

September 11, 2013

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.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

September 11, 2013

more

September 11, 2013

If it were not for the FPIES Foundation and the information that I was able to find, I do not know if my son would still be here today. Doctors kept telling me that nothing was wrong with my son. I knew something was very wrong. I was able to find a doctor through the FPIES database who was knowledgeable about FPIES and diagnosed my son at a year old. As a result he was finally able to get the help that he needed.

Ways to make it better...

If I had to make changes to this organization, I would...

None, the foundation is a life saving organization!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

September 11, 2013

more

September 11, 2013

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

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

September 10, 2013

more

September 10, 2013

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!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Contribute to the planning of Foundation events (such as food allergy fairs), assisting with administrative tasks, create a homemade item for our Hugs for Heroes program, contribute your specific talents and skills to enhancing awareness and outreach programs Volunteer