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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Specifically Named Diseases Research

Mission: Founded in 2005, the APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. The APSFA's Medical Advisory Team includes nationally & internationally recognized experts on Antiphospholipid Antibody Syndrome.

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

Programs: To provide information and education on antiphospholipid antibody syndrome

to support research regarding antiphosholipid antibody syndrome

Community Stories

9 Stories from Volunteers, Donors & Supporters

2

General Member of the Public

Rating: 5

I was diagnosed with APS 2 yrs ago and am so lucky I found this organization on the web. The amount of information available is amazing and it's always growing. Doctors should be required to visit the website to better educate themselves! Then they would learn that APS has many symptoms. APS Foundation of America Inc also helps ease my frustrations by reading stories shared by other people with this disease. I'm so thankful for this foundation and all the amazing people that make it possible.

Comments ( 1 )

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apsfa 06/18/2011

Thank you so much for your review!!

1 Chrissy P.

General Member of the Public

Rating: 4

About 2 years ago I was diagnosed with APS. Like others I had no idea what APS was . As I started to research what this illness that was I came across the APS foundation. Which truly has been a big help to me.Their website has great resources such as doctors that treat APS , articles and a newsletter with has lots of tips and stories of people that have APS. I'm so thankful for this foundation hearing some many stories about other people with APS has truly help me with dealing with APS.

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apsfa 06/09/2011

Happy to hear that we were able to help you out!!

1

General Member of the Public

Rating: 5

I was diagnosed with APS October 2010. When I first learned of my diagnosis I was scared and confused. The first thing that I did when I got home was throw myself into the internet to learn everything I could about APS. I came across APS foundation of America, and I have to say it was a sigh a relief. There is so much helpful information and it was written in a way that whoever was reading could understand it. I love the fact that they have a facebook, and on that facebook are so many people that have APS and can relate. I dont ever feel uncomfortable posting a quetstion because the people that are on there know what I am going thru and will not look down on me. I am greatful for a organization, it helps me in many ways understand my diagnosis and my family can go onto the site and get more of a insight of what I am going thru. In many ways it is my outlet when I am going thru my "down days". I am truely greatful.

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apsfa 06/07/2011

Thank you so much for your review. We are glad that we have been able to help you.

1

General Member of the Public

Rating: 5

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.

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tina5 06/04/2010

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

1

General Member of the Public

Rating: 5

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!!

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tina5 06/04/2010

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

1

General Member of the Public

Rating: 5

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.

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tina5 06/04/2010

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

1

General Member of the Public

Rating: 5

I was diagnosed with APS in 2008. I had no clue what it was or how to handle it. This foundation gave me answers and support. I am so thankful that I was able to find this wonderful support system.

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tina5 06/04/2010

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

1

General Member of the Public

Rating: 5

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.

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tina5 06/04/2010

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

1

General Member of the Public

Rating: 5

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

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tina5 06/04/2010

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