APS Foundation of America, Inc.

Rating: 4.69 stars   39 reviews

Issues: Health

Location: Post Office Box 801 La Crosse WI 54602 USA

Mission: Founded in 2005, the APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research, and patient services for Antiphospholipid Antibody Syndrome (APS) in an effective and ethical manner. Our Goal Is: To offer understanding and support to individuals, family, friends, and care givers of Antiphospholipid Antibody Syndrome; To offer information about and education on Antiphospholipid Antibody Syndrome; To support research regarding Antiphospholipid Antibody Syndrome by keeping the latest information available and referring people to such agencies who do research; To raise funds to provide information and education through public donations, grants, fundraisers, sponsorships, and bequests; and To bring national focus to Antiphospholipid Antibody Syndrome in the United States. The APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated specifically to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, and young strokes and heart attacks. We are a volunteer-run, community-based, non-profit organization.
Results: 2010 Year in Review (These are in no particular order.) * 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 do so. * Updated APSFA Booklet and reprinted it. * Updated APS Foundation of America, Inc brochure and reprinted it. * 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 400,000 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. * Attended 13th International Congress on Antiphospholipid Antibodies. * Bronze Sponsor for the 13th International Congress on Antiphospholipid Antibodies. * Sponsored & provided the prize for the winner of the Young Investigators Award presented at the 13th International Congress on Antiphospholipid Antibodies. * Sponsored the Autoimmune Diseases Summit: The Global State of Autoimmunity Today. * Attended the What Every American Needs to Know about Autoimmune Disease sponsored by the AARDA in both MA & MO. * Represented at the Annual Venous Disease Coalition Meeting. * Represented at the UCDavis Health System: Update on the Management of Thromboembolic Disorders. * Represented at the American College of Rheumatology Annual Meeting * Represented at the Lupus Foundation of America, Philadelphia Tri-State Chapter Living Well With Lupus Symposium. * Represented at the AARDA Global Summit: The Global State of Autoimmunity Today at the Church Center for the United Nations in New York. * Became members of the Coalition to Prevent Deep Vein Thrombosis. * Networking with other Non-Profit Organizations and medical professionals. * Maintained our Webpage –benefiting 142,143 people based on the index page. * Maintained the forum to make it more user friendly – benefiting 189,281 people. * Maintained HONCode Certification on APS Foundation of America, Inc. * Maintained HONCode Certification on APS Friends & Support Forum. * Earned the GuideStar Exchange Seal: Partner in Trust. * Awarded “The Hope Reward”. Our website now joins a select group of health websites that adheres to the highest standards of health information quality, ethical behavior, and respect for consumer privacy. * Working on obtaining the Better Business Bureau Accredited Charity Status. * Maintained several blogs & pages on various social networking sites on various servers to get awareness out – benefited at least 500,000 people. * Launched June 9th as World APS Awareness Day. * Continued June as APS Awareness Month. * Launched press releases – benefited at least 50,000 people. * Launched Radio Public Service Announcements – benefited at least 1,000,000. * Fundraisers: o Café Press – approx 370 items sold o World APS Day Items – approx 30 items sold o APSFA’s 5 Year Birthday Party – 17 participated o Holiday Related: * Giving Tree – 32 participated * Café Press Collectors Edition – 34 participated * Made Press in 3 different media venues that we are aware of – at least 100,000,000 people benefited o House, MD – “Instant Karma” (original air date: 10/15/09) – benefited at least 16,000,000 people. o Mystery Diagnosis – “Falling Through the Cracks” (re- aired several times, original air date: 3/6/2006) - unknown how many people benefited o The Beatles Network (APS Awareness month world wide awareness.) * Forum Information: o Average Number of Visitors: 3,971/month - High: 4,460 - Low: 3,560 o Average Number of Visits: 10,493/month – High: 12,183 – Low: 8,683 o Average Max Online: 17/month – High: 28 – Low: 10 o Average Page Views: 33,502 – High: 41,595 – Low: 27,073 o Average Number Posts: 583/month – High: 970 – Low: 228 o Average Number of Private Messages: 143 – High: 241 – Low: 83 o Number of Participants: 1,962 Recommendations: * Continue to find more avenues for fundraising. * Continue to collaborate with more organizations (both lay & professional). * Attend or have materials available for more conferences. * Apply for more grants. * Continue to search for more medical advisers. * Continue to attempt getting APS mentioned in more publications, including magazines. * Continue to making more videos and learn how to make podcasts. * Consider tapping in more social networking sites. * Consider going to a Board of Directors of 5, including one medical adviser & one public non-APS person. * Consider making June 9th World APS Awareness Day formally via a bill through Congress. * Consider making June APS Awareness Month formally via a bill through Congress. * Consider making a Scholarship fund for those going into the Medical Field. * Consider making a formal Scholarship fund for APS Research.
Geographic areas served: USA
2010 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

I was diagnosed with this rare blood disorder a little over 20 years ago. Because it is rare, it is difficult to easily find reliable information or to meet people who share this same diagnosis. Through this organization's online community, I have learned more about my illness and gained friends that are able to offer support/advice when I am having challenges.

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

In receiving a minimum of weekly postings from their Director, Tina Pohlman.

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

hope to see it continue to grow in staff and services.

Was this review helpful? 
Rating: 5 stars  

8 people found this review helpful

The APSFA has been a great support to me and my family. I have learned more from their website, support forum and information packet they sent from me. I have found the staff to be super friendly and really caring about me. They have helped me a lot. I love that they send their newsletter out by email for free. Those are always informative and many of their medical advisers write in them everytime. Their articles are cited and my doctors have used the references to help me get better care. Words can not explain how much they have helped me. Thank you!

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

the great service they have provided and excellent information and caring they have provided. I thank them for my life.

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

everyone is so honest, friendly and helpful and everything is cited. My doctors really take their information seriously.

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

the staff will go out of their way to help you to answer your questions and are willing to send you information to bring to your doctors.

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

run a large campaign educating the public & medical professionals.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

10 people found this review helpful

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.

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.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

10 people found this review helpful

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.

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

MY LIEF

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

no they are doing such good work Keep it up

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

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

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010-1-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

9 people found this review helpful

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.

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.

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

I would try to get more people involved.

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.

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

11 people found this review helpful

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.

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.

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

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

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.

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

10 people found this review helpful

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.

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

Support, encouragement and accurate information.

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

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

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?

2010-6-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 5 stars  

13 people found this review helpful

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

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.

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.

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?

2010-6-01

Was this review helpful? 

The APS Foundation of America, Inc appreciates your support. Please contact us if you ever need assistance. Thank you!

Rating: 1 stars  

11 people found this review helpful

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.

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

N/A

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2008-11-01

Was this review helpful? 

Once again, we have another basher that probably did not read the rules that they agreed to when the joined the private support forum. 

This “review” has *nothing* to do with the APS Foundation of America, Inc as a whole and appears that this is disgruntled member from a private support forum that refused to follow the rules of a private forum.  Rules that I will stress are very similar across all the APS support forums.

So, lets review the organization and not the forum.

As far as not educating the public & medical community regarding APS, that is a false statement.  Here is what we did in 2009: http://www.apsfa.org/docs/APSFA09YearInReview.pdf This year we spent close to $10,000 to attend, present & provide awareness at the 13th International Congress on Antiphospholipid Antibodies. 

June is APS Awareness Month.  There are hundreds of radio stations in 50 countries doing public service announcements every hour on the hour. And those are just a few examples off the top of my head.

Before you post, please get your facts straight.  Thank you.

Rating: 1 stars  

10 people found this review helpful

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.

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.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

Was this review helpful? 

Clearly this is a slanderous post. Clients are allowed to post their open and honest opinions regarding their care. This organization is very transparent and follows to the letter of the law. Also this "review" was place here to: "use the Site to threaten, stalk, defraud, incite, harass, or advocate the harassment of another person, or otherwise interfere with another user’s use of the Site" It is also odd that is not even remotely similar to other reviews posted on this service. Matter of fact, this name isn't remotely familiar.