Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
72 Reviews
1234.944445
| 1 ... 5 6 7 | Next
Write A Review
June 22, 2010

more

June 22, 2010

My son is 6 and has EE & EC, unfortunately when he was diagnosed @ 4 yrs the Dr did not offer much info and we had NO idea the extent of how this would change our lives. We were told to avoid a few foods and that was it. When he continued to have frequent illness and did not grow, I began to research on my own and discovered APFED. They directed me to a local group, and I cannot tell you the relief I felt to speak to people with the same experiences! Trying to explain to friends and family is impossible, and the APFED videos were a big help when family members informed me that I was making bad decisions in regards to my son's health. They've since kept their opinions to themselves, and we have surrounded ourselves with other families that are sharing in the same struggles. I can't WAIT to attend the conference, to meet moms I feel are friends, and to learn the latest research and treatment has to offer, so that I may offer my son a better future with food IN it!

The Great!

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

The amount of parents available to me to share information with, including doctors that are considered the most knowledgable about eos.

Ways to make it better...

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

??? Haven't experienced any negatives.

More feedback...

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

The willingness of people to help you look for answers in a complicated, difficult situation.

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

very pleasant and helpful over the phone.

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

provide research so that my child could eat food without it making him ill.

Ways to make it better...

??

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

The fact that Eos disorders are still considered rare, when in fact they are becoming more prevalent every day.

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

Children deserve to be able to eat food and experience a normal childhood.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 21, 2010

more

June 21, 2010

Both of my boys were diagnosed with eosinophilic esophagitis in April 2008. APFED's educational pages helped our extended family understand the medical condition and what they could do to support us as we initiated a difficult to maintain treatment plan. I attended APFED's annual patient education conference in July 2009. That weekend was one of the most amazing experiences of my life! Some of the top physicians and researchers in the fields presented information that has enabled me to advocate more effectively for my children's needs. Hearing the stories of other families with similar circumstances helped me feel less alone. I simply cannot imagine how difficult it would be to manage my children's medical needs without APFED!

The Great!

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

Informational materials (web pages, brochures, books, etc.), patient education conferences, development of ICD-9 codes, and the maintenance of a list of physicians self-reporting knowledge of eosinophilic disorders have all positively impacted my family.

More feedback...

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

meeting and interacting with other eos families.

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

invested in APFED's mission and the community that it serves.

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

eliminate physical and psychological pain for children through funds dedicated to research, education and advocacy for patients with eosinophilic disorders.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

APFED helps support families and patients living with Eosinophilic Disorders in many ways. They provide education through yearly conferences for families and for health care providers. They help raise awareness through education for physicians as well as patients and their families. In addition they are supporting researchers, as well as encouraging young researchers to become involved in finding new and innovative ways to further research for Eosinophilic Disorders.

The Great!

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

Seeing the addition of ICD-9 codes representing Eosinophilic Disorders, which APFED wrote, presented and fought for, to ensure that my patients are counted appropriately.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010
1 person found this review helpful

more

June 20, 2010
1 person found this review helpful

Where do I start? When my son was almost 2 he had a endoscopy and colonscopy and I was told he had eosinophilic disorder. I didn't know what to do next. Thru researching on the computer we found APFED. Thru APFED I found the RIGHT medical people for my son. My son was given the right medicine. By going to the APFED conference I found out more about his disorder, what they were researching and could hear other families going thru the same thing. They are my second family. We help each other. Without APFED we would not have a National Eosinophilic Awareness week. We would not have medical coding. They also raise monies for research. APFED saved my eos son and many others. Thank you APFED.

Photos

The Great!

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

Helping my son be at the right hospital getting the right care. Caring about every eos kid no matter where they are seen. They help eos kids who go to different hospitals all over.

Ways to make it better...

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

More monies since we are not on the list for NIH for any federal funding.

More feedback...

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

That when my eos child ever has an issue I can turn to them and get help in a minute.

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

wonderful and now part of my extended family.

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

use it the right way. In giving it to research at ALL the different hospitals and raising awareness.

Ways to make it better...

they need more money for research and for awareness.

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

That we need more money so that they can do more good for ALL the hospitals that are doing research.

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

without APFED I would truly be lost. I am blessed to have found them and thank them everyday. Last year when my son was 6 he held a fundraiser for APFED and again this year. Why? He wants all his eos friends to eat pizza one day.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

My son was diagnosed with a rare disease called eosinophilic esophagitis. Even his own doctors had no idea what this was or how to treat him. With APFED's help we not only educated his doctors but also have educated thousands of people in the community that had never heard of this before. It is only through awareness and education that we can find funding for research and ultimately a cure for the people who suffer from this. Through Apfed, I have met so many wonderful families that are going through this and I now know we are not alone in this fight. I thank God every day that Apfed goes out and fights for funding, educates the physicians so they know to look for this, and helps families who are struggling with this diagnosis.

The Great!

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

every aspect of our life. Without them there would be no coding for a diagnosis so our insurance could help pay for the medications and supplies we need to keep my son alive. They also provide training for the medical community.

More feedback...

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

the support they provide for families struggling with the diagnosis of a rare disease.

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

the most caring and knowledgeable people I have ever met.

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

teach the world about this disease that robs our children of the ability to eat and causes so much pain. They could donate enough money to researchers to find a cure for our children.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

APFED is great and helps change the lives of many. It doesn't need improvements; only funds to help find a cure for this disease and get further research on how they can help those who have it.

The Great!

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

.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010
1 person found this review helpful

more

June 20, 2010
1 person found this review helpful

Thank you APFED for saving my grandson. He is now 7 and was almost 2 when my daughter was told he had an eos disorder. Without APFED we would not be going to the right doctors. Without APFED she wouldn't know all the different medicines by going to the APFED conferences. They have saved my grandson. I love how they do research AND raise awareness. APFED got a National Eosinophilic Awareness week passed. APFED got medical codes passed. APFED raises money for research. My 7 year old grandson did a fundraiser for APFED for other eos kids. THANK YOU APFED! From an eos grandma - Eileen

The Great!

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

Saving my grandson

Ways to make it better...

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

None It is wonderful

More feedback...

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

that everyone is caring and helpful. They want the best for ALL eos kids no matter where they go.

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

wonderful

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

find a cure and raise more awareness.

Ways to make it better...

It is perfect the way it is

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

APFED saved my grandson and many other eos kids. Thank you! Before they came about medical staff did not know about eos disorders. APFED has raised awareness so that medical staff knows about this disorder.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

more

June 20, 2010

I have been the a volunteer with APFED since 2003, when my youngest child was first diagnosed with an Eosinophilic Disorder. My son suffered daily in horrible pain for 21 months, seeing 18 different doctors...all who were unable to diagnose what was wrong. Thanks to the wonderful staff at APFED I was able to locate a doctor who was verse in Eosinophilic Disorders, who was able to finally provide us with an accurate diagnosis and treatment plan. I volunteer for APFED because I truly believe in their mission to expand education, create awareness and fund research. No one, child or adult, should suffer like my son did. APFED is run by all volunteers, who either live with or have a loved one living with these disorders. Everyone involved is dedicated to making a difference for others living the same life. Thank you APFED!!!

Photos

The Great!

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

Not only the assistance APFED gave to me to obtain an accurate diagnosis and appropriate treatment of my own child, but the difference the organization has make for the entire EOS community!

More feedback...

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

The dedication of all the volunteers who run this organization!

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

dedicated, caring people, who were either living with, or have a loved one, living with an Eosinophilic Disorders, giving them the ability to tell others "We get it!"

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

Further education of physicians and the general public about Eosinophilic Disorders, as well as support major research programs to find better means of diagnosis, treatment and hopefully a cure!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

| 1 ... 5 6 7 | Next
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

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