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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EIN 20-3085295
608-782-2626
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Community Reviews

Rating: 5 stars  

11 people found this review helpful

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.

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.

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?

2010-6-01

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

Rating: 5 stars  

8 people found this review helpful

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!

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

feeling supported in my illness

How frequently have you been involved with the organization?

About every week

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: 4 stars  

8 people found this review helpful

APS foundation of America has organized lots of information that is so helpful to those of us suffering from APS. I had a stroke 13 years ago, but was not diagnosed until 2000. Hopefully, this organization will bring more attention to APS so new and better treatments will become available.

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

learning more about treatment plans

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

education

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

n/a

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

help find better treatments and causes for APS

How frequently have you been involved with the organization?

About every six months

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

Hi, I have lived with APS for over 26 years now. In 83 I had clots go to both lungs. I was carry a baby at the time (6 months). The babies heart beat was 50 bpm and mine was 30. This was before Hughs syndrom, sticky blood or APS was even known. I have had clots to the lungs, miscarriage, and the latest was dvts. I had so many medical problems and when I had the dvts, over 9 years ago is when I was told that I had APS. I went to a thrombosis research doctor and that is how I found out. He told me that I have had this for most of my life. It is a hard disease to diagnose. I have found out that even within the last 9 years, there is still many medical personal that really knows nothing about it. I think also that people that has it and is not able to work that it would be easier to get disability. The SS disability personal does not understand it either. My doctor does not want me to work. I wish that I could help with getting the word out about this disease so that it would help others and myself. I love the APS Foundation of America. My Daughter did a research paper for one of her collage classes and received an A+. I love reading about others and knowing that I am not the only one going through this. Not only is it hard on the person with APS but also the families. I pray for all that goes through this.

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

seeing that I am not alone

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010-1-01

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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 have been diagnosed with APS after 4 strokes and one spleen infarc. (between November 09 and April 10). I was on comaudin for a few months and still had strokes. The hemotologist finally deemed me a comaudin failure and I now inject Lovenox 100 mg twice a day. That is a life long prescription. I got home from my last hospital visit 5 weeks ago and found the APS organization. I am so grateful for having this information available to me and to help others by sharing my story. I know now that I have had a few strokes in my lifetime but I was always treated for anxiety or migraines. Thank God I now know the symptoms of a stroke and immediately get help. They listen to me now. The doctors and nurses had never heard of APS so we all learned together. Thank God for this website!!

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

I am gaining knowledge for my disease.

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!

Role: General Member of the Public
Rating: 5 stars  

11 people found this review helpful

This foundation has been a Godsend to me. I found it by chance surfing the internet looking up information on this crazy disease I have. The members of the foundation work tirelessly to provide and maintain the forum. The foundation has provided me with information to educate myself with and the support of good friends suffering the same illness as myself. They have been there for me during one of the darkest times in my life and have cheered me on on the happiest days as well. I would be lost without all of there hard work and dedication.

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

The foundation has geiven me the knowledge and the tools to take care of my health and to advocate for myself.

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

The support of others

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

Hard working and dedicated individuals despite their own illness.

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

Reach out to so many more people. More patients and doctors could be educated!

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  

8 people found this review helpful

I've received much information from the APS Foundation since my strokes. I am not able to tell you more right now, but they are fabulous at what they do...

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

Education regarding APS

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

how available they are!

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

wonderful!

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

change the world!

How frequently have you been involved with the organization?

One time

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: 4 stars  

9 people found this review helpful

After a major stroke in 2008 the doctors could find no reason for me to have a stroke. I was 48 and in moderate to good health. After much perserverance of my neurologist and the hemotologist he brought in and a battery of tests. They took blood until i thought i'd had no more to take. I was finally diagnosed with Antiphospholipid syndrome. After 1 month in the hospital and rehab. With several months of outpatient rehab to go my search to find out about APS with the help of my family began. that is when i found APS Foundation of America. They provided me with the information in needed and info I could share with my medical team to understand this under diagnosed disease. After reading more and more about it I feel I may have had this much longer than suspected. APSFA has been very helpful to me my doctors and family in learning about this disease. Spreading the word and getting people the help and information they need to find out about this disease and learn how to live with it. Christine White

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

learning more about my disease and how to live with it.

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

alot of good educaiton information avialable and medical help finding doctors who know about the disease

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

very knowledgeable, kind, caring individuals

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

spread the word about APS raise awareness. expand research. help more poeple with this disease.

How frequently have you been involved with the organization?

About every six months

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 found out in 2007 that I had APS after clotting during a surgery and subsequently getting two pulmonary embolisms. Nobody seemed to know ANYTHING about this disease and I had to do the research myself. APSFA provided great information, reading recommendations, support materials to give to my doctors and have a wonderful patient forum. At one point, my doctors were tracking my PT/INR with a finger stick machine and the APSFA was where I found out that finger stick machines don't work for APS patients! They can give an incorrect reading. They pointed me to the manufacturer materials that stated the machines were not for APS patients. Now my doctors always check my levels with a blood draw to insure a truer measure. This could be the difference between health and another blood clot.

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

I use their forum to discuss coping strategies, new symptoms and recommendations on products. I also use the materials to raise awareness with the public and my health care team.

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

the helpful and friendly people I have 'met' through the support forum!!!

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

create blanket awareness campaigns with the medical field and with the public. They would have the starter funding to start research fundraisers similar to the way Susan G. Komen has for breast cancer.

How frequently have you been involved with the organization?

About every month

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  

8 people found this review helpful

In 2002, our 14-year-old daughter was found to have APS during pre-operation labwork. She had some unusual symptoms but we never knew what they were from. After her diagnosis, we were able to find so much helpful information from the APS Foundation of America. This organization is an important resource for a condition that is under recognized and poorly understood in much of the medical community. After our daughter's death in 2007, we asked that donations be made to the APS Foundation of America so that they may continue their efforts. Thanks for your help and support!

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

I appreciate the help and support that this organization offers. APS is a very serious condition that needs more understanding, awareness, and attention in the medical community. It is more than just blood clots, strokes, and pregnancy complications.

How frequently have you been involved with the organization?

About every month

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!