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June 2, 2010

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June 2, 2010

After losing a son at 18 weeks gestation and being told I had APS, I was very scared of what it all meant. One doctor told me I should never try to have children and another told me I didn't know what I had because they couldn't find the APS diagnosis in their medical database. I found this website while doing my own research and was so glad that I did. I was able to talk to other people who had gone through similar experiences as well a those who have been affected by APS much more than I have. I have gotten a much better understanding of symptoms and what to watch for in the future. Through the help and information on this site, I was able to have a healthy and safe pregnancy.

The Great!

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

the APS support forum-I received lots of information and support as I went through a pregnancy.

More feedback...

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

helpful staff members and lots of information on many different aspects of APS and how it affects your life.

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

very kind and friendly.

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

help so many people and doctors with awareness and education. Also help fund research.

How frequently have you been involved with the organization?

About every month

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

more

June 2, 2010

I was referred to the APSFA through the Lupus Centre in Britian. I had been diagnosed for a while, and I was finally ready emotionally to learn more about the disease. APSFA has provided me with information that has made an incredible difference in my quality of life. They are the ONLY place that I feel comfortable going to for accurate information about APS. I also am very appreciative of the support forum. Being able to learn from the experiences of others with APS provides me with great strength and comfort to endure this disease with courage.

The Great!

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

the APS support forum, Facebook

Ways to make it better...

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

change absolutely nothing!

More feedback...

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

the level of care and concern that the APS staff and members have for each other.

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

AWESOME, supportive, and wonderful people!

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

provide much more awareness of APS and provide grants for research into the causes and potential treatments for this disease.

Ways to make it better...

my experiences have always been great!

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

I believe that the APSFA could always use more funding to further their cause.

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

this is a great non-profit organization! I would strongly recommend the APSFA to anyone who has been diagnosed, has a family member or friend who has APS, or is looking for information about APS.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 2, 2010

more

June 2, 2010

I totally support your charity even though I do not have APS. I feel you are doing a wonderful and excellent job educating the general public and helping people. Take Care, Iris Springflower

The Great!

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

Facebook

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 2, 2010

more

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

more

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

June 2, 2010

more

June 2, 2010

As the president of the APS Foundation of America, Inc, I would like to share the accomplishments of 2009. Every year we work harder to get awareness out and work on education to the public and medical community. - Maintained 501(c)3 Non Profit Status granted under Section 170, 2055, 2106, 2522. We also were granted an advanced ruling as a Public Charity. - Filed Taxes - Registered to solicit in the states we were required to - Made all brochure & booklets that have bibliographies available – available online - Published quarterly newsletters that are available free to the public on our website – benefited at least 200,000 people - Donated & Mailed Brochures & Booklets –benefited at least 20,000 people - Donated Printed Publications to Public Libraries – Unknown number of people benefited - Invited to several large professional medical conferences. - Networking with other Non-Profit Organizations and medical professionals - Maintained our Webpage –benefiting 76,839 people based on the index page. - Maintained the forum to make it more user friendly – benefiting 183,844 people - Maintained HONCode Certification on APS Foundation of America, Inc. - Maintained HONCode Certification on APS Friends & Support Forum. - Started and maintain several blogs on various servers to get awareness out – benefited at least 200,000 people - Launched press releases – benefited at least 50,000 people - Launched Radio Public Service Announcements – benefited at least 5,000 - Fundraisers - Café Press – approx 400 items sold - Holiday Stuff - Giving Tree – 38 participated - Café Press Collectors Edition – 3 participated - Made Press in 5 different media venues that we are aware of – at least 100,000,000 people benefited - House, MD – “Instant Karma” (original air date: 10/15/09) – benefited at least 16,000,000 people. - Death of Tom Sparks due to APS – picked up by AP Wire - unknown how many people benefited (Picked up on TV, radio, internet, newspapers & social networking sites) - Mystery Diagnosis – “Falling Through the Cracks” (re- aired several times, original air date: 3/6/2006) - unknown how many people benefited - Number of Friends of APSFA: 35 benefited

Photos

The Great!

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

a great sense of accomplishment in helping others and spreading the word about APS. I have also received advocacy from our Medical Advisers and volunteer Social Worker. I have also made some great friends!

Ways to make it better...

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

find more volunteers and professionals willing to step up and donate their services.

More feedback...

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

making new friends and knowing I am making a difference in the world regarding APS Awareness and helping APS patients & educating medical personnel.

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

great and easy to work with.

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

make chapters in every state and be able to afford to attend more conferences.

Ways to make it better...

we had more committed volunteers.

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

financial. With the economy being tight, donations are lower and makes it hard for us to do what we need to do and attend what we want to attend.

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

the staff, volunteers, medical advisers, and board of directors are a hard working bunch. I am proud to work with them.

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