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June 26, 2011
2 people found this review helpful

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June 26, 2011
2 people found this review helpful

My 2 year old son was vomiting for 13 days straight. In the hospital they just kept saying that he had a bad virus. After being admitted and running a battery of test the G.I. doctor told us that my son had eosiniphilic esophagitis. My wife, my in - laws, my parents and myself had no clue what he was talking about. We ran home and started googling things and became even more upset and angry. My 2 year old son would never eat like a normal person and we knew nothing about this disease. Through our googling we came across APFED and quickly started to find some real answers. The foundation has been amazing for us and in turn we had a fund raiser this past March and we donated over $45,000 to the foundation. We are determined to fight this disease and one day I want my son to eat like a little boy or girl that can eat normal foods.

The Great!

I've personally experienced the results of this organization in...

helping me answer important questions and have someone to speak to that understands our situation and has been thru what we are dealing with.

Ways to make it better...

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

Allow me to start a NY Chapter

June 24, 2011
1 person found this review helpful

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June 24, 2011
1 person found this review helpful

My son was diagnosed with eosinophilic esophagitis when he was 3. It was a long road to finally receive his diagnosis and treatment. APFED has become a staple in my life. I received more information on this site than from my son's physicians. My family and I will be attending our 1st APFED conference this summer and we can't wait.

The Great!

I've personally experienced the results of this organization in...

As research continues, my son will always personally gain from this organization. Without APFED, I'm not sure others would really understand these disorders.

Ways to make it better...

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

None. It has provided me with all the information I have needed.

June 21, 2011

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June 21, 2011

Apfed has been invaluable in helping us deal with our daughter's chronic disease. Their website alone is a tremendous source of information, covering topics from research, to education, to advocacy.

The Great!

I've personally experienced the results of this organization in...

Apfed helped us find other families with children with this disease, and specialists that know how to treat it.

Ways to make it better...

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

help raise more money for research!

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

How did you find this group?

internet searching

What, if any, change in your life has this group encouraged?

It helped us find doctors that were knowledgeable in this disease, which greatly increased my daughter's quality of living!

When was your last experience with this nonprofit?

2011

June 21, 2011

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June 21, 2011

APFED and the information we have gained from the website, other parents, and related activities has been a tremendous help to our family in understanding our son’s diagnosis of Eosinophilic Esophagitis. The information provided to us through this website has been very comforting and served as a resource for other people in our community. The volunteers/employees of APFED are extremely helpful and timely in responding to any questions or information asked of them. My husband recently competed in a triathlon to help raise money for APFED. Julie Springer was extremely helpful in providing needed information and assisted him in anything he asked of her (sending a link for our family blog, posting on APFED website...). Thanks APFED for helping us on our EoE journey.

The Great!

I've personally experienced the results of this organization in...

This organization has helped to strengthen our family's knowledge of this disease. It has also helped us to meet numerous other parents of children like ours. We have joined online support groups through meeting people from APFED. In addition, we are attending our first APFED conference this summer to learn more. We are very excited about learning more about this disease and ways in which we can help our son.

Ways to make it better...

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

Pray for money donations to allow this organization to continue in its awesome efforts.

June 20, 2011

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June 20, 2011

Last summer my then 2 year old son was diagnosed with Eosinophilic Esophagitis. I will never forget that day, ever. When the doctor came to speak to us while our son was in recovery and I remember her saying, "Good news, your son's colon looks great, no evidence of Celiac Disease. However your son has Eosinophilic Esophagitis." I asked her to repeat it, because she said it so quickly and nonchalantly. I still didn't understand her after the second time, so I asked her to spell it on a hosptial paper that I had in my hand. We had two weeks to stew with this new information, google it and research it, freak out over it before a follow up with the GI. Amazingly and sadly a childhood friend of my husband, her son had been diagnosed 6 months prior. The first thing she said to me when we talked was to stop googling and go straight to the APFED.org website. She said it was the only website she would refer to and what her son's doctor would refer to for accurate information. This made a world of difference. Then about 7 months went by, my son had another endoscopy. My son's eosinophil count came down, but not enough, so we started the elimination diet per the doctor. This is when things got even more tough for me and no one around me (sometimes even my loving, dear husband) couldn't understand my son's needs. I was poking around the APFED.org website and stumbled upon the local support group section. I decided that I needed reinforcements and called the contact person for my local group. It's been the best decision ever. These parents have been so welcoming. We even had our 2nd annual EOS walk. My son alone raised over $500 dollars that all went to APFED.org for their mission of Education, Awareness and Research of Eosinophil associated disorders. I can't stress enough how valuable this group has been and we intend to save up and go to next year's 10th Annual APFED conference!! Everyone and anyone that will listen, the first thing I do is tell them how crucial APFED.org information has been and continues to be for my family, other families and the medical community affected by and dealing with these debilitating eosinophilic disorders.

Photos

The Great!

I've personally experienced the results of this organization in...

many positive ways. Anywhere from gathering more information just to explain and educate grandparents to doctors about what an eosinophil is and how it can affect several areas of the body. To finding my local support group that has helped me further understand the disorder and how different every eosinophilic case really is. It's helped me put things in perspective and to thank my lucky stars that my son's case is not as severe as it could be (for now). APFED.org has been a vaulable resource!

Ways to make it better...

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

I honestly for now can't think of anything. APFED.org is doing great work on keeping everyone informed and up to date on the newest, leading research on eosionphilic disorders.

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

What one change could this group make that would improve your volunteer experience?

Cant think of anything. I would forever volunteer for APFED.org. It's the least I could do for all the support it has provided to my family.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

My local support group that I found through APFED.org website has truly been a great experience. Although I hate that any of us has to deal with this horrible disease, it's been a great comfort knowing that my family is not alone in this EOS fight. It has taught me there is no better advocate for my 3 year old than being educated on eosinophilic disorders and speaking up for his rights since, for now, he doesn't have his own voice. I hope with my involvement, donations and advertisement of APFED.org, one day my son will grow into a well adjusted, healthy man that will one day see a cure for his disease. I truly believe this will happen with the all the hardwork APFED.org continues to do.

How did this volunteer experience make you feel?

Not enough words or space you have provided, can truly express how forever grateful I am to APFED.org.

When was your last experience with this nonprofit?

2011

June 17, 2011
1 person found this review helpful

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June 17, 2011
1 person found this review helpful

APFED is an organization that is vital to the education and support of families dealing with eosinophilic disorders, as well as treating physicians. Education, advocacy and the support of research have, together, increased the availability of appropriate medical treatment and the quality of life for patients.

The Great!

I've personally experienced the results of this organization in...

Both of my children have eosinophilic esophagitis (EoE) which is a rare medical condition that is virtually unknown to most physicians who meet them for the first time. APFED has helped me to understand the condition which, in turn, allows me to educate medical providers and effectively advocate for their medical care. Networking with patients and physicians at APFED conferences led me to the team of physicians that now provides my children with care that is superior to what they previously received.

Ways to make it better...

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

I cannot think of any changes that I would make to the 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?

2011

June 6, 2011

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June 6, 2011

APFED has been a great resource for my family. Apfed provides updated resources for my son's physicians. They continue to work towards raising awareness in the community and in the medical field. They are also working on furthering research by encouraging new researchers to get involved in researching eosinophilic disorders. Their conferences have been awesome!

The Great!

I've personally experienced the results of this organization in...

Education for myself and my family

Ways to make it better...

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

More money from the government for eosinophil associated disease research

July 5, 2010

My 5 year old son has an eosinophilic disorder, is currently off all food, and gets all of his nourishment through a feeding tube. Shortly after his diagnosis, I attended the APFED conference in Cincinnati. I learned a tremendous amount that has helped me care for him and make more informed decisions about his medical care. The community of support that APFED has brought our family and the education we have gained is invaluable. We are looking forward to this year's conference in Denver!

The Great!

I've personally experienced the results of this organization in...

-gaining invaluable education through their conferences, website, and newsletters that have helped me to make well informed decisions about my son's medical care. -met others living with EGIDs. -participating in National Eosinophil Awareness Week.

Ways to make it better...

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

-make their website more user friendly: make it possible to link specific pages and make the message boards more user friendly and easily accessible.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

-the reliability of the information they provide. -unmatched expertise in EGIDs. -conferences and newsletters. -National Eosinophil Awareness Week. -We are thankful for the insurance codes AFPED worked so hard to get.

The kinds of staff and volunteers that I met were...

-passionate about their work.

If this organization had 10 million bucks, it could...

-work even harder to find a cure for our kids.

Ways to make it better...

-the website (especially the message boards) were more user friendly.

In my opinion, the biggest challenges facing this organization are...

-lack of understanding about EGIDs in the medical community.

When was your last experience with this nonprofit?

2010

July 4, 2010

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July 4, 2010

My name is David, I am 25 years old, and I have suffered with eosinophilic esophagitis my whole life. I can't eat any chicken, fish, tree nuts, or peas, beans, lentils (legumes) or I get terrible chest pains and I can't swallow. Also, in the early fall if I go running or exercise, I may feel sick and have to stop. These things may seem bad, but APFED has taught me that I am actually lucky, compared with others with my disease. I came across their message boards on the kids with food allergies website and soon found some videos on youtube made by the group. I learned about the many kids who have this disease. Some of them can't eat any food and have to have a feeding tube for nourishment. Some of them get sick even without food, if there's something in the air they are allergic to. I had no idea there were so many with the same problem as me. Watching these videos breaks my heart, but it also helps me cope with my own problems, realizing they are not so bad. The alienation I felt telling my friends I couldn't eat chicken throughout my life, is actually small in comparison to what some of these kids go through. I hope APFED will continue to grow so that the rest of the world will see how strong these kids are. I also hope APFED increases worldwide understanding of this disease, so that maybe some doctor out there can come up with some better solutions for these kids. Thank you APFED, keep up the good work!

The Great!

I've personally experienced the results of this organization in...

My own personal struggle with the disease.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

Two of our grandsons at the ages of 2 and a half years have been diagnosed with Eosinophilic Eosophagitis. After the initial shock and denial, we have decided to learn more about this life-altering disease and enhance our awareness. APFED has helped us immensely through their well-organized Educational Conferences and their updated Newsletters. During the conferences, we were able to meet and talk with Professionals from all over the United States who are working towards finding appropriate treatments for these rare diseases, learn about nutritional plans and understand the social and emotional inpact of these diseases on the lives of children affected by EE and EGID diseases. APFED has also helped several families find support systems and connect them to appropriate services. APFED has been working diligently to obtain funding for Research and finding treatments for these life-altering diseases.

The Great!

I've personally experienced the results of this organization in...

Educating patients and their families, establishing support systems, engaging professionals, raising funds for Research and cure of EGID diseases.

Ways to make it better...

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

Organize Webinars to disseminate updated information.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Patient Education Conferences, News Letters.

The kinds of staff and volunteers that I met were...

Very knowledgeable, dedicated and hard-working.

If this organization had 10 million bucks, it could...

Fund Research and help finding a cure for EE and EGID diseases.

Ways to make it better...

APFED organized Webinars periodically to update information.

In my opinion, the biggest challenges facing this organization are...

Indadequate recognition and awareness of the EGID diseases, and lack of funding for Research to find a cure.

One thing I'd also say is that...

Twitter Party was not very helpful.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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Assist with research of grant opportunities; proof quarterly newsletters; assist with conference planning; assist with fundraising; and many more opportunities. Volunteer