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June 5, 2010

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June 5, 2010

I was just recently diagnosed with APS and like many people before me, came to the internet looking for and finding the answers to many of my questions at this web site. If it wasn't for all the many wonderful people whom were there to chat with, who understood and know the pain and confusion that accompanies this disease,I am not sure what I would have done. So I thank you APS Foundation for being there for me.

The Great!

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

That they where there for me. From the personilised greeting to any time I just need to vent, or need answers to my many questions.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

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June 4, 2010

I was diagnosed 3 yrs ago with this disease due to dvts in both my legs and a clot in my arm. My docs took so much blood from me over a week doing test after test and found that I have APS. I didn't understand the severity of what I have. My docs didn't know that much about it. So i had to result to the internet to find out more about this disease. They were one first website and went to it. I found so much information and was able to get more answers that I was able to teach my docs something. I took in articles in so they could learn how to treat me. I am not a Leper and thats how the docs made me feel. I also learned not to have fingerstick blood test for the blood thinner i was on. And to seek a rheumi to get more answers. For the people who run this organization I give them alot of credit for giving info that saved my life. If it wern't for them I would probably be dead and buried right now. Thankyou Aps foundation of America. Keep up the good work and keep it going and save more people like me.

The Great!

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

MY LIEF

Ways to make it better...

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

no they are doing such good work Keep it up

More feedback...

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

when I joined their forum. The people are so nice and helpful and care

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

Awesome

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

help get the cure going for this disease

Ways to make it better...

why chane

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

nothing

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 4, 2010

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June 4, 2010

In August of 2009 I had the worst headache I had ever experienced in my life. I'm not a napper, I don't lay down unless I feel awful. Over the weekend of the headache, I was in bed most of the time. I finally went to the emergency room where they discovered that I had blood on the brain. Further tests revealed that I had a blood clot in the vein that drains blood from the brain. In February of 2010 I was diagnosed with Antiphospholipid Antibody syndrome. I didn't know anything about the syndrome so I went to the Internet to find answers. I found the APSFA and their support forum. I am thankful because this disorder is such a mystery and the APSFA had many answers that my doctors did not. I have found the APSFA very helpful and the support forum great because you can share your experiences with others who have the same symptoms and problems.

The Great!

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

I have gained knowledge that has helped me to understand and speak with my medical team with confidence.

Ways to make it better...

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

I would try to get more people involved.

More feedback...

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

The APSFA has links to so many websites and articles that can help me talk to my medical team with a degree of knowledge that I would not have if I had not found this nonprofit.

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

The staff and vounteers are all greta and welcoming and helpful people.

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

If this organiztion had a 10 million bucks it could help find a cure for APS.

Ways to make it better...

My experince would have been better if I had found out about the APSFA earlier.

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

There are not enough volunteers to help the staff.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

I was so relieved when I found the APSFA after suffering from numerous blood clots and finally getting my diagnosis of APS. My doctor didn’t explain the disease, just handed me a prescription for Coumadin and said I would be on this medicine for the rest of my life, and I would need to be careful because it was a powerful drug with potentially deadly side effects. I was so scared. I went home that night and started searching the web and read everything I could get my hands on. The APSFA is the one and only foundation that provided me with what I desperately needed at that point in my life. Their web site had an easy to understand glossary and description of APS. I found professional looking brochures that I printed and gave to my family. I read newsletters that had stories of other APS patients that I could relate to. I also found a support forum on their web site. There I met the most wonderful, caring, understanding people who helped me cope with the devastating news of my recent diagnosis of APS. APSFA has also provided cited medical information to several of my doctors who have used this information to improve their treatment of my condition. APSFA has promoted awareness of this blood disorder which has helped so many patients get a quicker, more accurate diagnosis. I would be happy to share my experiences with the APSFA with anyone that wants to hear more.

The Great!

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

improving awareness of the disorder within the medical community via newletters and distribution of cited medical information from national conferences.

Ways to make it better...

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

like to help them with more fundraisers to spread APS awareness.

More feedback...

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

the amount of information I've gathered on my blood disorder.

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

understanding, supportive and very knowledgeable

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

support APS research world wide.

Ways to make it better...

some people on the forum followed basic forum etiquette. I found that there were some people who posted hurtful comments. These type of things are not allowed on any forum. Those people were banned and that made the forum a better, and safer place.

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

fighting people who have a personal vendetta against the foundation.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

When I tested positive for the antiphospholipid antibodies a couple years ago, I had no idea what I was dealing with. My "team" has included an excellent rheumatologist and the APS Foundation of America. Because of the honest information I received there, I learned questions to ask my rheumatologist, the most current research on treatments and, maybe for me, hope that I could go on and lead a normal life. Yes, it would take monitoring and medication, but I could work and still be me. Since then, I frequent the site often and have tried to be an encouragement to others as they have been and continue to be to me. I would recommend this foundation to anyone dealing with aps.

The Great!

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

Support, encouragement and accurate information.

Ways to make it better...

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

probably change nothing. I love the way the new website is easily maneuvered.

More feedback...

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

The information and support I've received.

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

Honest and welcoming.

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

Sponsor research, disseminate information, sponsor education seminars for physicians.

Ways to make it better...

Can't think of a single thing.

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

Funding and lack of consensus on optimal treatment among medical personnel.

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

This organization exists for all the right reasons.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

The APSFA has helped me in so many ways. I get so much positive hopeful energy from everyone on the site and I am grateful that the APSFA is there. There is not a lot of good information out there to help people with APS but the APSFA is full of much needed information and I use the site daily. In addition I use the forum on the site to get support, we do a weekly check in and I have found friends with APS so I no longer need to suffer with APS alone. There is no charitable organization more deserving than the APSFA that I know of. I have a lot of medical issues other than APS and I can even get links from the staff at the APSFA to find out about those issues. I am hopeful that the APSFA will win this money as I need them as do many others who use the site. It is important to note that my doctor even uses the site to get information that he can't find elswhere. Thank YOU for taking the time to read my review and please consider the APSFA to recieve this award. Make it a great day, Peace, God Bless

The Great!

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

I have needed information about my syndrome and the APSFA has always been able to provide a link so I can be up to date and informed about APS.

Ways to make it better...

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

This organizations works perfectly the only change I would make is in myself, If I had more money I would donate more to support this organization, they need supplies that they can't afford, and the work they do is tireless they don't make money doing it.

More feedback...

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

I always know that if I need support or information it is just a click away every day of the year.

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

I have not met them directly but online and on the telephone only. They are caring considerate and I consider them to be friends, the staff are also members of the support forum they are great.

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

Help more people by spreading the word, do more marketing to get the information out there as there are many people with APS that dont' have a wonderful support forum. They could do so many wonderful things with more money.

Ways to make it better...

My experience has been wonderful, the changes to the webpage have made it even easier.

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

The medical community does not treat people with APS well, therefore the APSFA does not get a lot of financial support either, they need financial support the most.

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

I can't thank the APSFA enough for being there for me when I had a stroke, they supported me and kept me going I was at a very down point in my life, had it not been for my friends on the APSFA I may not have made it through that ordeal.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

At first I had a good experience with this organization. I had recently been diagnosed with APS and joined the support forum and used their site for information to take to my physicians. After a short while I began to notice that there was only a small group of active members on the forums and they were often very negative towards others who had ideas/suggestions/recommendations that differed from theirs. I myself ended up disagreeing with one of the primary posters in defence of another members statement and was in turn publicly put down on the forums and made to feel as if my opinion was "dumb" or "stupid". Since that time I did not return to the site. I do not feel as if the primary members of the support forum truly do provide support. They use the forum to promote their treatment beliefs on others without having respect for other people's opinions. Several times members were removed for disagreeing with the moderators for simple statements that were in opposition to the admins/moderators.

The Great!

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

N/A

More feedback...

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2008

June 4, 2010

more

June 4, 2010

I also have APS. I came to the site and found the web page difficult to navigate. I joined the support forum and found the negative bashing of healthcare providers contagious. Those who do not follow to the letter the ideas of the founder find themselves attacked by the few frequent followers. In the other communities it is known that MANY in need of support will get over their flares only to become strong and want to help more. They are eventually banned if they hang around long or leave disgusted with the experience. Unfortunately most that have been mistreated will not take the time to give a negative review so this group will receive credit from the few and not the masses.

The Great!

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

Other than seeing their computer networking links to other similar sites, I have never received a personal experience that has helped. To the contrary this group has alienated the medical community as well.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

I have SLE Lupus. I also have had blood clots, DVT, miscarriage etc. Chatting with the APS staff has helped me so much. The infomation thats on there site helped answered questions my doctors have failed to answer.

Photos

The Great!

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

I've have read so much information from APS that has helped me in so many ways. I'm much more aware of what to look out for and how to better take can of myself. I also try and help others be aware of APS.

More feedback...

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

Reading the information they put out and sharing it with others with lupus.

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

They are very available to answerer questions. Helping people on the internet all of the time.

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

Start more chapters.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

APSFA is an amazing non-profit. They have successfully created an online support forum that is a life saver to people diagnosed with antiphospholipid syndrome or those who have symptoms and are still trying to get a diagnosis. they are also a central clearing house for research and medical information on APS and related conditions. They do great work!

The Great!

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

feeling supported in my illness

More feedback...

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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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...

help with answering questions on the our support forums. You could also write a more cited technical article for our newsletter that could also be published in various places. You could also write and produce a YouTube video for the APS. You could also attend a conference, set up a booth for us at a session that the APSFA was invited to attend. Volunteer