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2010 Top-Rated Nonprofit

APS Foundation of America, Inc.

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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

2

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.

3

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.

3 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.

3

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.

3 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
2

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.

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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!

3

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

2

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.

4

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

4

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.

4

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.

2

Client Served

Rating: 5

I was diagnosed with APS in 2002. I had never heard of APS until then.
I started searching for information, the library, the internet. I began to understand what I had but found no one else with this disease.
Frustrated I searched the web looking for anyone who could understand and help me.
Finally I came across the APS web site and learned that a few more people had this disease. APS has given me the support I need to go on. It has offered information on drugs, genetic research, and treatments for APS. It has helped my family understand the disease. I don't feel alone anymore!

Comments ( 1 )

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apsfa 06/07/2011

Thank you so much for the review. We are glad we have been able to help you. We have been trying to get more media attention. It has gotten better. We have been on Mystery Diagnosis & House. The Mystery Diagnosis Segment is available on iTunes here: http://bit.ly/ViCpw APS has been mentioned in passing by Dr. Oz. We have been sending letters to shows to get a response. We have more media picking up stories about people and running them in their local papers. Tina has done a 45 minute interview with a radio station outside of DC with the help of an employee there who also has APS. You may be interested in this page: http://www.apsfa.org/media.htm Now, it is just time and money and help from you the volunteers & clients to push the media to run a story on it. Together we all can get this in the media!

2

Client Served

Rating: 5

I was diagnosed with APS in 2005. There were only a handful of physicians who knew about, let alone understood, the full impact this has on my life, and will have on my life, until my last day. Suffering with this not-well-known disease was difficult. I felt alone. I am thankful to have found the APS Foundation to have the support and resources to help me, my family, and even my employer, help understand this debilitating, silent, invisible disease.
As a patient, the support and understanding has helped my family and me better understand and cope with the sudden limitations placed on my life. The Foundation members are thoughtful, compassionate, educated, up-to-date, and have their "finger on the pulse," of any/all new updates we, as sufferers of this disease, need to know. Additionally, the APS Foundation is an excellent resource for any aspect of APS -- the patient or physician both can utilize. I am thankful for the foundation and its hard work and dedication to the sufferers and the cause.

2

Client Served

Rating: 4

When my husband found out he had APS there was not a lot of information about it on the web. The APS foundation has not only been a great source of information, but because it's such a rare disease it's helped us not feel so alone.

2 Judith P.

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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!

Comments ( 1 )

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tina5 06/16/2010

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

1

Client Served

Rating: 5

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.

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tina5 06/06/2010

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

1

Client Served

Rating: 5

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.

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tina5 06/06/2010

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

1

Client Served

Rating: 5

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.

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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

Client Served

Rating: 5

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.

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!

1

Client Served

Rating: 5

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

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!