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37 Reviews
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January 23, 2011

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January 23, 2011

I love being a part of this group. The support and information I have needed is always available through this group. The information is life saving for those who have to live with Anitphospholipid Antibody Syndrome.

The Great!

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

Provided my the necessary materials to leave in Drs offices. Also had the needed information to argue a treatment with my care givers.

Ways to make it better...

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

na

June 4, 2010

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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 2, 2010

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June 2, 2010

My story starts when I was a teenager, I woke up in the middle of the night with screams of pain. My head felt like it was going to explode, When My parents placed a cold washcloth on my forward I was finally able to close my Eyes. As I layed there, There were what seemed like fireworks going off in my head. I believe this was what I believe to be my 1st TIA. At this time my mother took me to the Doctor, There were no answers, only questions. I showed up to have "some kind o venereal disease. I was only 13 at the time, very much a Virgin. My parents did not know what to think. My mother at this time was having one of the first Hip Replacements at USC. I believe she also had APS, first diagnosed as childhood RA. She had been on prednisone for most of her life. She had been diagnosed with diverticulosis. I believe this was due to her Lupus and the combination of the cortisone. I am now going to flash forward to my 1st born son. For some reason I started labor at 7 months. He was born at 5.5 pounds, Incredibly healthy yet Jaundice. At that time no red flags went up to any of my Doctors. I have been a dance Educator, and a certified Aerobic step Instructor. At age 47 I had my 1st Stroke, and no answers to the reason why. Finally my neurologist sent me to UCSF where they finally diagnosed with APS. This is when I became aquainted APS Foundation. I am so glad they were there. I live in far Northern California, Arcata CA. There is no information locally about this disease. Because of APS & Facebook I have been able to educate my friends and Family about this Disease. I don't know what I would have done if they were'nt a strong Non-Profit. God Bless thier staff & doctor's!

The Great!

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

I am waiting to have knee surgery. APS patience need to be carefully bridged off the Coumadin, One staff recently sent me the correct protocols for Surgery. Turns out the surgeons had no Idea of how to bridge me. Wrong Lovenox Injections.

Ways to make it better...

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

Keep up the Face book, Twitter, and have more staff on the West Coast. At least the bay area, More seminars on the west coast.

More feedback...

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

The most recent Information on APS.

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

Incredible!

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

To start having State sites

Ways to make it better...

I could reach out to more APS Patience's locally

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

A Bad economy.

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

Keep up the fantastic work!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

When my husband was diagnosed with Antiphospholipid Antibody Syndrome, we felt helpless and had no where to turn in the USA for support. Most APS patients feel that way when first diagnosed...alone, helpless, confused, scared. The APSFA helps them realize they are not alone - there are others out there who live with this disease, the same symptoms and the same struggles with doctors. The APSFA strives to provide the most up to date and cited information for APS patients. We spend countless hours working behind the scenes so that the website is accurate and the support group is a save haven for APS patients. I have made many good friends through the APSFA and the support forum and have found comfort in the fact that we are not alone, others feel the same way and when you're diagnosed with an autoimmune disease like APS, that's important.

The Great!

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

the numerous people who come to the support forum or email us and thank us for the work we've done and for the information on our site...makes it all worth it in the end to be helping others!

Ways to make it better...

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

wish we had more committed volunteers.

More feedback...

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

the extensive knowledge I've learned about the disease, the courage to change my husband's doctors when necessary and the great friends I've made!

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

helpful, dedicated, compassionate, and overall great people.

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

have multiple chapters, face to face support groups, and attend seminars, conferences and congresses on a regular basis which would allow us to help more APS patients nationwide.

Ways to make it better...

we had more volunteers.

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

donations are down due to the economy, which hinders us from attending events and helping APS patients. Also we need more professionals (Physicians) to help us with articles for our newsletter.

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

if the volunteers of the APSFA continue to work as hard as we have and stay focused and dedicated, we will be able to accomplish everything we set out to do!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

I have been diagnosed with APS since 2003, The volunteers have championed the need for a US chapter for APS until now we have gleened information and support from the UK. Now we can really start pushing for the Medical Community in the US to become much better educated on this disease. Thank you all for your unwavering dedication.

The Great!

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

I have participated in spreading literature and awarness.

Ways to make it better...

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

have not found any need for changes

More feedback...

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

The dedication to getting the word out about Antiphospholipid Antibody Syndrome in the United States

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

Very supportive and knowledgable

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

Sent key people to APS congresses to be educated

Ways to make it better...

NA

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

Getting the medical community to realize we have special needs and to come around to the medical awarness of the UK

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

This has been to long in getting off the ground. But glad it has finally happened.

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
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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