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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

31 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

Wonderful people raising awareness of APS. I don't know where I would be had I not found APSFA. So much concise information on APS all in one spot offering amazing support for APS sufferers and their friends and families. Truly amazing group! If I could give 10 stars I would.

2

Client Served

Rating: 5

I have lupus and APS. I enjoy reading posts on this page cause this group understands what I'm feeling and how frustrating it is to go to the doctor and be ignored. More education is needed for the public and the medical profession.

2 Alanna3

Client Served

Rating: 5

First diagnosed in 2004 with APS. The foundation was the first support group I found. The information and support has been incredible and has saved my life many times. If it weren't for the knowledge shared here I don't believe I would have lived this long. I'm so very grateful that the APS Foundation exists and helps so many of us with support and knowledge.

2

Client Served

Rating: 5

When I am confused about what is happening to my body because of new and/or worsened symptoms for APS or other possible autoimmune disorders, this is where I go for support and/or clarification. You can count on current and accurate information as only verified and cited information is provided. Also, the forum/Facebook page moderated by Tina Pohlman is just such a great source of support as well. Highly recommend both sites.

2 karyn2

Client Served

Rating: 5

APSFA has literally been a life saver! When I was first diagnosed about 15 years ago, I stumbled across the site in my quest for information. They are the only site that I have found that has comprehensive knowledge backed up with studies on not only APS but also other common autoimmune conditions. I also joined their support forum at that time and have made wonderful, knowledgeable, life-long allies and friends. The Facebook group had continued the tradition of support and sharing of information. I would definitely recommend this site to anyone with APS!

Previous Stories
1

Client Served

Rating: 5

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.

Comments ( 1 )

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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!

2

Client Served

Rating: 5

After being diagnosed in 2008 with APS, the APS foundation of America helped me get information and resources to help live with this deadly disease. I am so very thankful for APSFA , without their education and support, they have helped me so much with my quality of life ! It's amazing that connecting with others that struggle with APS, many of us feel no longer alone, but yet part of a family, providing support and love to each other ! -Sharon Jacques , Mrs Wiscasset International 2017

1

Client Served

Rating: 5

Although I was diagnosed with antiphospholipid syndrome (APS) more than 10 years ago after multiple blood clots in my lungs, it wasn't until I discovered the APS Foundation of America a few months ago that I realized how little I actually knew about my condition. First and foremost this group provides valuable, up-to-date information about APS that is not anecdotal, but research based. The group forum is the first place I go with questions about symptoms and treatment to get users' personal perspectives. It can be very reassuring to learn that I am not the only one who has a particular feeling or opinion. The forum is a place to empathize and cheer on people who are in a difficult state related to their APS. It is a place for the newly diagnosed, as well as people who have been through it all. It seems there is always something new to learn. My experience with the APS Foundation of America has been nothing but positive and empowering.

3

Client Served

Rating: 5

With the APS Foundation of America & the assistance of the staff, I would never be where I am today. For numerous years, I suffered Blood Clots, Seizures, Transient Ischemic Attacks, problems with thinking clearly, headaches/fatigue & other neurological symptoms such as dizziness & vertigo. My problem; I lacked an answer & a direction to my health issues. Unfortunately, numerous doctor doctor appointments with Specialists left me without any conclusive results, ending my journey to place a name to my ongoing issues. Stronger medication seemed like the only answer, leaving me with feelings of hopelessness. This process endangered my life & most importantly, my family. We suffered through financial issues as my health kept me from being competitive in the job market. We were losing faith until someone told me to check out this website.

What a difference maker! After a couple of calls with the Foundation's President, everything changed. We started placing names to associate my symptoms. We created a plan on how we should move forward & get the answers we need. We changed everything from local Doctors/Specialists I was currently seeing & changed them with specific Doctors/Specialists from a different location to give me a chance to find answers I have been searching for. The Foundation's President attended every doctor's appointment I had. After years of frustration & a lack of answers, it took less than 6 months to get the correct diagnosis to my ongoing health issues: APS.

The Foundation's President also helped with legal issues concerning both Long-Term Disability to Social Security Disability Insurance. With APS being a rare autoimmune disease, lawyers & judges were at a standstill how to move forward with both of my Disability cases. The Foundation's President spent numerous amount of time with APS information, how it affected me & how it would keep me from being competitive in the job market. Phone calls, e-mails, written testimony, you name it. She even served as my SSDI Representation!! In both disability cases, I was found credible & won, resulting being legally declared disabled. She was there for me from start to finish. My family will always be in debt to her.

Comments ( 1 )

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apsfa 03/09/2015

Thank you for your review. We are glad we have been able to assist you.

Review from Guidestar

3

Client Served

Rating: 5

APSFA has really helped me learn my disease. Many doctors that I have spoken with since I learned about my disorder know little-to-nothing of my condition, and many aren't willing to work with clients who have APS. Their Facebook page and Website have helped me understand my condition immensely. I'm glad to see that they work hard to find grants that will aid the study and treatment of APS and help to give information to the public, doctors, and patients. They regularly connect with people who have APS, and give far more information than many other sites who also focus on the disease, and have financial transparency along with a 501c3(a must for any organization who wants to raise awareness for a disorder like this). When I found out that I have APS, they were the website that gave me the information that I needed to get a handle on what I was reading. Thanks to APSFA, I now have a better understanding of APS and what I should look at in new doctors.

Comments ( 1 )

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apsfa 03/05/2015

Thank you for your review. We are glad we have been able to assist you.

3

Client Served

Rating: 5

I was diagnosed w/APS 10 years ago. I've had multiple DVT's and PE. I've never been to a doctor that seemed interested in answering my questions and most of the info I have came from my own research. This disease is scary and I've never had anyone to discuss my fears or answer my questions until I found this page. For years I've felt like I was all alone in this as family and friends simply do not understand how devastating APS really is. Now I have a place to go for info and support. I'm suddenly not alone anymore.

Comments ( 1 )

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apsfa 06/21/2011

Thank you for your review. We are glad we have been able to assist you.