APFED
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When my son was diagnosed with EoE almost four years ago, I quickly recognized my need for a supportive community familiar with the needs if families dealing with EGIDs. I contacted APFED, and they provided me with a gray level if personal support. With the assistance of APFED I was able to start a local support group, the Atlanta/N. GA Eosinophilic Disorders Support Group (GAEOS). Thanks to APFED's support and networking GAEOS has been able to help dozens of families. Thank goodness for APFED.
The Great!
I've personally experienced the results of this organization in...
My family's life and the lives of the members of GAEOS.
Ways to make it better...
If I had to make changes to this organization, I would...
Maybe a few website changes for easier navigation.
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.
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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.
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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
When our daughter was diagnosed with an eosinophilic disorder three years ago, we felt we had no where to turn for information. We had never heard of the disorder and knew no one else with it. At a routine doctor appointment the physician mentioned that an annual patient conference given by Apfed would be held in our state in the following few months. We attended the conference and learned more in those few days about the disorder than we had in the 6 months since our daughters diagnosis. Apfed provides education, support and promotes awareness of a disorder that can deeply affect a patients life.
I am grateful for Apfed and the help they offer patients and their families.
The Great!
I've personally experienced the results of this organization in...
finding the support and education needed to help my daughter get the medical care and emotional help she requires to deal with this disorder.
Ways to make it better...
If I had to make changes to this organization, I would...
1. Make a file on the website that would allow individuals access to legislative material to help with state or national amino acid insurance coverage. 2. I feel many members are not aware of or know how to become involved in organizations such as NORDA or Senate bills that may affect amino acid coverage. 3. Find a way to let more doctors, doctor offices and hospitals aware of Apfed and its local chapters. Register for United Way in each county and state where there is a support group.
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
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
By starting a local support group I have met other families and patients that live with this disorder every day. I love and cherish each of them and the lessons they teach me and my family. I would not have even thought of starting a support group if it were not for Apfed. Became active in state legislation.
How did this volunteer experience make you feel?
Great! Tired!
When was your last experience with this nonprofit?
2011
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
APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being so sick. After numerous tests, scans and steroids our son had no change in his condition. At the age of 2 he was misdianosed with acid reflux. Our son was diagnosed correctly with EE at the age of 3 and then was removed from all foods at age 4. This was a drastic change in his life and ours. How do you tell a 4 year old that there is no more food in his world? Our family was gieven this information and then given the name of APFED as an organization that may be of help to us. The first day back from Cincinnati Children's Hospital I called the number to APFED and spoke to the president. She was encouraging and helpful and put me in contact with other families who were struggling down this same path. Through numerous conversations and encouraging words our family was guided down the path of adapting to a foodless world. When I expressed a willingness to coordinate a grand rounds, I was provided with everything that I needed to follow through with that objective by APFED. We were impressed by the dedication of APFED to families, to education, to initiatives and to research that we decided to hold a fundraiser for APFED. We had never taken on such a task before but we were driven on behalf of our son and on behalf of an organization that was instrumental in saving our family unity. We decided to hold a golf tournament and donate all of the proceeds to APFED. Wow! What an inspiring thing we did together as a family. Working together on this project helped to mend our broken and hurting hearts knowing that we were contributing and giving back to an organization that helped us more than words can say. We are now in our 6th year of holding a fundraiser and have raised over $80,000 for APFED. We are paying it forward and will continue to do so. APFED has made huge strides on behalf of patients and families and the least we could do is give back. APFED will always have a special place in our hearts for giving us the HOPE to keep on. Thank you APFED!!
The Great!
I've personally experienced the results of this organization in...
I have personally experienced the results of this organization's commitment to patients and families.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
that APFED puts patients and families first. This has been shown by their persistance to establishing universal codes that are recognized by the medical community in diagnosing patients.
The kinds of staff and volunteers that I met were...
extremely helpful and generous with their time. Whatever questions I had were quickly answered and when help was needed with certain situations, encouragement was offered.
If this organization had 10 million bucks, it could...
make a huge step in wiping out a disease that painfully affects so many.
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
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.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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
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
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
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