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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 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 Syndrome.

Results: 2019 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.  Made all brochure & booklets that have bibliographies available – available online.  Donated & Mailed Brochures & Booklets –benefited at least 50,000 people.  Invited to several large professional medical conferences.  Represented at the Annual Venous Disease Coalition Meeting.  Represented at the American College of Rheumatology Annual Meeting  Partially funded Research for APS ACTION  Promoted APS iBook published by Laurent Phialy, Stephane Zuily, and Dourk Erkan  Sponsored local La Crosse Professional Police Association Concert that support local programs  Maintained EURORDIS membership  Networking with other Non-Profit Organizations and medical professionals.  Maintained HONCode Certification on APS Foundation of America, Inc.  Earned the GuideStar Exchange Seal: Gold Participant.  Searched for more medical advisors. Added 2 to the team.  Attended a Nonprofit Resources Night to learn more about grant writing, giving trends, and other topics.  Continued collaborative Effort with the Coordination of Rare Diseases at Sandford (CoRDS) Registry.  Attended & Spoke at CARRA 2019 Annual Scientific Meeting  Continued June 9th as World APS Awareness Day.  Continued June as APS Awareness Month.  Participated in Deep Vein Thrombosis Awareness Month  Participated in Lupus Awareness Month  Participated in Stroke Awareness Month  Participated in Heart Disease Awareness Month  Participated in Autoimmune Awareness Month  Participated in Rare Disease Day  Participated in World Thrombosis Day with APS Awareness & Fundraiser for APS ACTION  Tina Pohlman won Runner Up for World Thrombosis Day  Participated in Pregnancy Loss and Stillborn Awareness Month  Supported various legislation through a national coalition of patient organizations  Launched press releases – benefited at least 500,000 people.  Launched Radio Public Service Announcements – benefited at least 2,000,000.  Donated $3200 to APS ACTION for their ongoing needs in research.  Donated a total of $6000 in bursary grants for the 16th International Congress on Antiphospholipid Antibodies in London.  Donated $1000 for the general fund for the 16th International Congress on Antiphospholipid Antibodies in London.  Shared reputable articles pertaining to APS at lay and professional level, as well as disease related such as DVT, PE, stroke, Raynaud’s for example.  Shared reputable disease prevention articles.  Shared inspiration and motivational posts.  Maintained Twitter Account. Working on verification. Followers: 2,079  Maintained Instagram Account. Followers: 1,221 http://apsfa.org/new/wp-content/uploads/2020/03/2019-Year-in-Review.pdf

Target demographics: patients with Antiphospholipid Syndrome (APS)

Direct beneficiaries per year: 1,000,000 people

Geographic areas served: USA

Programs: information and education on antiphospholipid syndrome to support research regarding antiphosholipid antibody syndrome

Community Stories

90 Stories from Volunteers, Donors & Supporters

2 Kim Sapone B.

Client Served

Rating: 5

I found out I was pregnant for the first time in January 2006. My husband and I were so excited to welcome this new little person into the world. About halfway through the pregnancy, however, I had a false positive on my syphilis test. Numerous tests were done and I was told I had something called Antiphospholipid Antibody Syndrome. I was completely confused by what this diagnosis meant - and so was my OB. I was the first patient of his to have it. The first thing I did was jump online and search for this crazy-sounding syndrome. I found the APSFA website right away, and a wealth of information at my finger tips. I printed articles and brought them to my doctor. I had several pregnancy complications, but ended up with a healthy daughter, who is thriving today. When I got pregnant again in 2008, my doctor and I were far more comfortable with plans before and after conception, and, even though I did have complications again, I had a wonderful son. I truly don’t know if that would have been possible without APSFA. Now I am on Coumadin for life and the information that APSFA and its extremely knowledgeable and dedicated leader, Tina Pohlman, have given me has continued to shape my life. Facts like Coumadin is only safe choice for APS patients, and that fingerstick machines aren’t accurate for us - information I am sure has saved my life. Plus, there is a wonderful Facebook group that allows us to reach out and connect with other patients and share our experiences. APSFA is one organization I, and many others, would be lost without.

1

General Member of the Public

Rating: 5

I was diagnosed five years ago with APS. Without this group, without Tina, I would not be where I am today with my health. The information, insight and honest concern from all members has made this more bearable and more understood for me. I HIGHLY recommend this group!

1 Franny Malcolm B.

Client Served

Rating: 5

APS Foundation of America is a lifesaver!!! I was first diagnosed in 2006 with. APS and I was overwhelmed and confused. This nonprofit was so helpful. The president, Tina, even called to check on me a few times when I when I was extremely sick.

I believe the group had only been started a few years earlier, but the medical information they had available saved my life. The information gave me guidelines for my doctors and myself. And, most importantly I did not feel like I was dealing with this strange disease by myself. I finally had someone who understood my frustration and my symptoms.

That was in 2006 and fast forward to 2020. I website and facebook page are so important to those newly diagnosed and to us "oldtimers". I learn new facts all the time and I can also share my successes with APS with others. APS is a difficult disease because the symptoms vary from individual. But, the APS Foundation guides the discussion so that opinions can be shared by all - but supported by medical facts.

I love that we add our doctors that are great in dealing with APS that way others can seek the help they need. The Foundation has grown through the years through social media, but its roots still deal with the medical facts that APS patients need.

1

Client Served

Rating: 5

The APS Foundation is a true lifesaver! I'm so very thankful to have found them back in 2005. Many times over the knowledge the group has provided has saved my life. I was diagnosed in 2004 and to my delight finally found someone with very knowledgeable information on this dreaded disease that was killing me. Without the APS Foundation I would not be here today. I'm so very thankful to the Foundation for their endless hours they put into running this to help so many others.

1

Client Served

Rating: 5

I have APS. The APS Foundation of America is a great source for support, and information. It’s great for those of us living with APs or for our loved ones and medical teams looking to educate themselves.

1 Paul S.12

Client Served

Rating: 5

I was diagnosed with APS in 2003. Like myself the majority of people including Doctors and nurses didn't know what it was. 17 years later,I'm still learning. I just threw a clot in my eye which cause me to be blind in my dominant eye. I am on Lovenox and follow my doctors orders to the tee. In spite of taking methotrexate and orencia; my APS titers spun out of control resulting in a clot. Being part of the APS foundation doesn't cure me but it helps me connect with people suffering the same affliction. I learn from them. I work with them to alert others what APS is. Through them we inspire others to learn, understand and assist those who deal with this dreadful autoimmune disease. I hope that one day because of APS Foundation, my children, grandchildren and great grandchildren will never suffer from APS and other autoimmune diseases.

1

Client Served

Rating: 5

When you are diagnosed with a syndrome that isn't really studied and therefore little information exists about it, you need a group of people who are there for you, who know exactly what you're going through. Emotionally and physically, APS is a devastating diagnosis, and so little is known about it, those with it NEED a group to share the "few and far between" bits of information. This is a fundamentally helpful group to those with APS. You can not only get information about the physical realities but also resource support. People with this diagnosis really don't even know what questions to ask so it's difficult to know how to advocate for yourself as a patient. Without this group, APS patients would be lost at sea without an oar. This group provides that oar.

1 Linda Schaeffer S.

Client Served

Rating: 5

I have learned a great deal about how to take care of myself as well as advocate for myself. The knowledge that I have gained through the update research has facilitated my acceptance and courage to face APS.

1

Client Served

Rating: 5

Excellent resource for support, education, and help for those with APS.

1

Client Served

Rating: 5

As an APS patient, I had few places to turn for answers, due to the, somewhat, rare occurrence of this illness. I have found a wealth of evidence-based, timely knowledge, as well as a community of support. APSFA has been an invaluable resource to myself and even some of my medical providers! Thank you for your great work on behalf of the APS community!

1 Suzanne K.2

Client Served

Rating: 5

This is my go-to group for accurate medical information for APS. I also appreciate the support provided.

1 Tanner8657

General Member of the Public

Rating: 5

I would be lost without APS Foundation of America. Two out of three of my kids have APS with totally different symptoms. Information from this site and the support group has gotten me through so much anxiety and worry, I can’t thank them enough. Both children received proper treatment because of information from APSFA and the administrator of this non-profit. I love the personal touch and sincere caring I receive from here. I feel confident with their new and updated information which I share with my children’s doctors. The extra special things are an added benefit. Recently, APS masks were made and sold at a great price. I was so excited when I opened the package - they were packed in a beautiful mesh bag, with an APS pin and pen and information. The extra time the Administrator put in to make them special is so appreciated. I thought it would be just a plastic bag. All the APS colors coordinated . Those things really count! They are super soft and comfortable. When we are dealing with this strange disease, new information and a few words of comfort from support group members make a huge difference in our lives. I don’t feel alone. I feel free to ask questions. I’m so happy I found this sight. It is run with integrity and I feel confident in any information I learn. If I coukd give 10 stars, I would ❤️


Previous Stories
1

Client Served

Rating: 5

I found APSFA, I feel, at the exact right time. Because of the President, Tina, and the other members of the support group, run by this non-profit, the lives of my pregnant daughter, my new granddaughter and my son, both diagnosed with APS, were saved. I was very worried when my 37 year old daughter became pregnant and surprised the family at Christmas already 14 weeks pregnant. She was diagnosed with APS at age 19, when she got a clot after some minor ankle surgery that allowed her to be mobile. The diagnoses was confirmed with a second test. Throughout her life she has had severe migraines and symptoms of Lupus or RA. Throughout the next 18 years and many many doctors, her tests for APS, Lupus and other Autoimmun diseases were negative. She was told, she does not have APS over and over. During this wonderful surprise of my first grandchild, I asked if she let the OB know she was diagnosed with APS. She said that no, she was told for years that she doesn’t have APS (all tests were negative). That’s when I found this wonderful non-profit and support group. When I put forth my question regarding the positive APS tests when my daughter was 19, but since that time 18 years ago, she tested negative and she is pregnant with her first child—Should I be concerned? Tina, along , with many members told me that once you have it, you have it. It doesn’t go away regardless what the tests say. I was still a little doubtful, but didn’t want to take any chances with my first grandchild or my daughter. She made an emergency appointment with her OB and they referred her see a Fetal Medicine OB Specialist. He immediately put her on Lovenox shots and repeated the exact thing I was told by the support group. He ran labs for APS, and low and behold, they were positive! (After 18 years of negative). I can’t thank this group enough for their upfront information and strong encouragement to me to make sure she gets checked immediately. I now have a 6 week old granddaughter because of the Lovenox shots and the ultrasounds that we’re done every month, then weekly. That’s only a part of why this non-profit needs to be recognized. The advice given is always scientifically sound- no heath miracle wonders or old wives tales- you get medically sound advice from what the President of ASPFA has been educated on. She doesn’t pretend to be a doctor- she will tell you what doctor you need to see and what you need to ask and what medications you need to ask about also. I had many concerns about my daughter and my son. I thought I knew about APS, but as it turns out, I basically knew nothing of value. My son had major surgery in 2010. At that time he developed his first clot. They kept coming and he too was diagnosed with APS. They inserted an IVC filter at that time - he was on a variety of medications and got clots on them all- fast forward 9 years to this year. He has clots from the blocked and opened filter to his ankles. The blood flow was nearly non-existence. Tina advised other medication he should be on. We made an appointment with hematologist and they gave him a statin, added aspirin and another new medicine. Through this process, we found a surgeon, who just last week, removed the 9 year old filter and ballooned his clots in an 11 hour surgery. I can’t thank this non-profit enough for the information I received and the questions I asked were always answered - even through the night. I highly recommend the ASPFA- they saved my children’s life by informing me of meds they should be on. This non-profit deserves recognition for the information they can give you regarding your disease, but is also a shoulder to lean on. I learn more and more everyday and couldn’t ask for better support. I highly recommend this non-profit if you are looking for good info and great support. You will find your answers here! Cindi Gall 8/5/2019

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1 Linda P.8

Client Served

Rating: 5

I had a lot of hesitation about joining an organization on Facebook. I don't normally do this but I am very grateful that I did. I was diagnosed with APS on April 27,2020 after having a couple of strokes and no known risk factors. I was supposed to start taking Eliquis the Friday of that week. Since I didn't get back to my doctor right away about starting it that day it was delayed to that Monday. I joined the foundation that weekend and learned the gold standard was Warfarin and not Eliquis for my condition. I was very appreciative of the research articles available to help me learn about my condition. Now they are selling great masks to educate others about what I have. I am very appreciative of the group and the support.

1

Volunteer

Rating: 5

I began having symptoms in my teens, I was misdiagnosed with syphilis at 18, then received surgery and found Crohn disease, another auto immune disorder. I got my first triple clot down the back of my leg in my early 20s. I spent the next 15 years experiencing difficulty walking. Doctors could not give me an answer. After a minor surgical procedure I was laying in bed and I began experiencing what felt like fire in both my legs, the pain was unreal. I screamed for what seemed like ages. I finally took an 800mg ibuprofen and found soon relief. It took another 6 years for anyone to take me serious enough to do dappled studies. But when they did they found an 89%blockage in my aorta, I was placed in the hospital for bypass surgery and bi lateral, bi femoral graft. I then had 4 graft clean outs due to addition as long clotting where the graft met the artery in the groin areas of bother legs. During one procedure the doctor dropped matter into the artery and as he cleaned it out he clotted the entire artery off from toes to groin. After the leg finally died I was sent to the university of Denver hospital and had below the knee amputation, at that point the vascular department was determined to find out why a 38 year old vibrant female just lost her leg. Well....APS. not just any apse but severe. They studied the proper treatment and began the standard course for my disease. Six months later I lost the leg above the knee. I have since had 2 additional graft bypasses due to clotting off. In January of 2020 I lost the other leg above the knee due to a doctor not properly trained in apse procedures. During the opening to amputate the team could visually watch my blood clot 5 times before they took more safety measures. I have also been diagnosed with a handful of a additional auto immune disorders.

There needs to be more teaching, training, and information available for APS and other as utopia immune disorders or more and more people will loss, babies, limbs, and there lives to these disorders. There are so many people around the world with APS.....please help us and doctors, nurses, and researchers get a better practice for treatment.

Thank you,
Twila J Rich
239-478-8310
allingoodtime2014@hotmail.com
900 Aqua Isles Blvd. Lot L2
Labelle, Florida 33935

1

General Member of the Public

Rating: 5

This foundation has helped me with the information needed to understand this disease. I was diagnosed in April 2020 after being admitted to the hospital with bilateral pulmonary embolism. I was scared and was doing research on APS and came across this foundation. No need to look any further because this foundation gave me all the information I needed.

1 Dee H.3

General Member of the Public

Rating: 5

My experience with the APLS foundation has been wonderful! I absolutely love my mask and it helps me feel a bit safer in this crazy time! Anytime I need advice they have been there! I was diagnosed in 2013 with antiphospholipid syndrome.

1 littlestro

General Member of the Public

Rating: 5

I found the APS Foundation of America by chance about 19 yrs ago after suffering a stroke and being diagnosed with APS. I never heard of this autoimmune disease , my Docs never heard of it and in the beginning of my journey I found myself afraid and isolated. I was referred to a Rheumatologist who was one of a handful of professionals who knew what APS was and how to treat it. Together we set about finding a treatment for me that would allow me to return to an almost normal life.
I researched APS and came across this site and the support group that helped me to understand what I needed to do and allowed me to ask questions of the experts and people with this disease. They offered me support and gave me knowledge of the treatments and medications available to me. It was a God send and a game changer for me because I now had the knowledge and resources needed to become my own advocate . I have through the years taught many of my Docs and medical professionals about APS. It was and still is a vital resource for me.

Previous Stories
2

General Member of the Public

Rating: 5

Been a member for almost 17 years! Thank you Tina & APS Foundation for all you do. The information and help on this site has gotten me through some tough times.

Read more

Client Served

Rating: 5

Awesome nonprofit. Always working hard for its clients. I like that that they provide science based information and medical journal information that we can share to our doctors. Our doctors seem to appreciate that more than "a nonprofit or support group said" we should try this.

They have been in the media a lot these past few 6 months which impresses me as well and donating to research. Keep up the great work.

1 Maela P.

General Member of the Public

Rating: 5

I just wanna thank Tina Marie for everything she did, does and will do in the future.
Thanks to you and your work, I learnt more in 10 months in this group, than in 9 years of APS with doctors.
In France, you can't find answers in a non-medical language.
You allowed me to understand my illness, and myself.
Merci.

1

Client Served

Rating: 5

I have always had a really great experience with them,
Tina is very sweet and caring and knowledgeable about APS

1 Julie O.4

General Member of the Public

Rating: 5

My daughter got diagnosed with APS at 10years. In my country Kenya, very few have ever heard of this disease. Its been a tough journey but being part of the support group has made my journey easier. Without the presence of specialized pediatric rheumatologist or hematologist or even APS specialist the APSFA materials shared by Tina have been my conversation piece with our daughter's pediatrician. The stories of other members have been a huge body of knowledge and a source of strength to look forward to tomorrow. I just had a PE and here is my guidance in every appointment. This group is a God sent.
Thanks to all its members and more so the president Tina who is always on hand to point us in the right way.

2 Debra C.4

General Member of the Public

Rating: 5

My name is Debra Clark, my story is not unique, it's like so many others. Which is why it is so important for us to get our stories out. I had a difficult time getting pregnant, after two c-sections was told never to have any more children that it was too risky. That was in 1983 and 84
I had my first DVT in 1987 I was a manager of a restaurant, on my feet all the, and at home with two little ones, no rest for the wicked. I had two more DVT's in 2002, while at a festival my legs cramped so bad I couldn't walk. I thought it was Charlie horses, and tried to go to sleep that night. I was woke up by bad chest pain, I have asthma and COPD so I took several treatments. After 14 hours I went to my pulmonologist and found out the blood clots moved to my lungs , I now had double Pulmonary Embolism. So they ran a test looking for Factor V Leidon gene. It came back negative. So they said it was because I smoked and I had really healthy blood, and it was really thick.
Now fast toward, I had 13 surgeries, each time I had to tell my surgeon's that I had a history of blood clots, and that I have healthy thick blood. They would put me on lovenox shots for 6 weeks and I would be done.
In 2015 I was working in two different hospitals, both in the ER's when I had what they thought was a optical migraine. Only it didn't go away, and part of my right face was numb. The nurses and doctors thought maybe I had a torn Retina, they thought I was working long hours, and slept wrong on my face, they sent me to a eye doctor. He took a look, and sent me back to the ER, he said I had a stroke.
After seeing a Neurologist, having an MRI, seeing an Hemotologist, they finally discovered I have Antiphoslipid syndrome. Now I go back to both hospitals tell them what I have, and no doctor has ever heard of it. My heart drops, I feel defeated.
I get home, I go to the internet. I look at several websites and I come across this one. I grew up in West Salem / LaCrosse area so I felt like if any one could help they could, even though I was living in Kansas at the time. I didn't know where to start, I knew I needed to file disability, because of the stroke it caused partial blindness, short-term memory loss, I stuttered, and I tried to continue working, but eventually would have to quit. If it wasn't for Tina Pohlman and APS Foundation of America Inc. I would have never made it. They helped me through the process of disability, answering questions about my disease, finding doctors, understanding tests, and having a shoulder to cry on.
Thank you for all you do , because of you , my story it's over.

2 Patty B.3

Client Served

Rating: 5

I discovered apsfa 10 years ago after I was diagnosed with APS. None of my doctors knew anything about my illness. My husband and I relied on apsfa for ALL our information on Antiphospholipid Antibody Syndrome. I now am a member of their support group on Facebook. I actually created a Facebook account solely to be a part of this group. The hard work that Tina puts in with providing all the up to date information is invaluable. Apsfa is my go to source for APS.

2 Michael S.11

Volunteer

Rating: 5

I first got associated with the APS Foundation last October when it’s president, Tina Marie Pohlman asked for assistance on moderating the forums maintained on Facebook. It has been quite the education, first in just learning what this devestating disease is, learning what it is to deal with it, and also spreading education and awareness. A surprising and even alarming number of physicians are barely aware of what APS is if they even know about it at all.

The foundation keeps, aquires and revises educational materials which are useful to those afflicted on everything from drugs, interactions, the very latest in research as well as keeping a listing of specialists that people can go to who know about and understand the disease.

For a lot of people, this is literally life saving. If you have APS, or suspect you have it, the APS Foundation and it’s resources are there to help.

2

Donor

Rating: 5

Always helpful with medically accurate information my medical team will accept. Would not be alive without this organization.

3

General Member of the Public

Rating: 5

APS Foundation of America is my critical link to information about APS. My local doctors are really unfamiliar with this disease and only because of a Foundation posting did I find the name of an expert in my area. I am seeing this doctor soon and hoping for real answers and relief from the symptoms. This could be a turning point in my struggle with the disease. Thank you APSFA for making this possible.

3

Client Served

Rating: 5

I'm 19 and was headed to college when I became sick in November 2017. I couldn't get well. My Mom kept taking me to the clinic and the ER as well as my doctor. On December 13th I began feeling bad in a different way so I called my Mom. She came and picked me up and we went to the ER. After blood test the doctor determined I was having a heart attack. Life flighted to heart hospital and 4 days and nights in CCU and it was confirmed I had APS. My Mom was struggling with the diagnosis so she started hunting and found this organization. It has given her answers and support during the past 6 months after diagnosis and several surgeries and many tests. I'm glad to know there are others that can help answer questions and share experiences though our lives. It helps everyone to have similar people sharing similar experiences.

3

Client Served

Rating: 5

I was diagnosed with APS after suffering a cerebellar stroke in October, 2016 and a DVT (deep-vein thrombosis) behind my right knee six weeks later. Looking back, APS may have played a role in a "widow-maker" heart attack in 2014 that by rights should have killed me and very nearly did. After the stent was placed and the clot removed, restoring blood flow, I experienced reperfusion ventricular fibrillation (V-Fib) when not all of my heart muscle wanted to get in synch with the rest. It took FOUR attempts at cardioversion before things settled into rhythm.

I found out later that the hospital contacted my wife, who was en route, and told her that my status was "extremely critical."

I'm a research-oriented type, so I read extensively on this condition once I was diagnosed. But the medical community doesn't yet recognize all of the incredible array of symptoms that this disease can produce. That's why I'm so grateful for APFSA and the resources it's put together, as well as its APS Friends & Family Facebook page.

Tina Pohlman has created a safe space for people with APS to vent, to seek answers, and to provide coping tips. Since APS is a rare disease, having the chance to hear from others who are experiencing the bewildering symptoms of APS is both a lifeline and a reassurance that we are not alone in our struggles.

Thank you, Tina and the Foundation

3

Client Served

Rating: 5

To whom it may concern, I just don't know where I would be without this. They helped me so much with all the new info I was searching for when my youngest daughter became ill with APS. The support & information is beyond words. I tell everyone about the great experience I have had and continue to receive. I hope together we can raise awareness and support for patients as well as family. Such a great non profit. Thank you.

3

Client Served

Rating: 5

I was diagnosed in 2015 with APS and thank God I found APS organization! Tina and the researchers have been a wealth of information! many doctors to don’t have the knowledge base required when a patient is diagnosed and I am greatful for this organization pointing me in the right direction! very useful resource and love they support all the research being done!

3

Client Served

Rating: 5

Fantastic organization! I know when I go there, I'll get up-to-date, sound information. No woo woo info here!
The forum is a godsend. It's nice to be able to share my ups & downs with people who truly understand.

3 Crystal P.3

Client Served

Rating: 5

The information from this foundation has helped my life tremendously. I dont know where I would be in life right now if I did not have the support from the APS Foundation of America

3

Client Served

Rating: 5

The APSFA literally saved my life. When I was first diagnosed with antiphospholipid syndrome over 15 years ago, I was lost and scared. I'd had another DVT (blood clot in my leg) and had been diagnosed with this very scary sounding disease. I had doctors that were unsure of how to treat me and was using a home machine to test my blood that wasn't working right, and I didn't know why. I somehow found my way to the APSFA, and they gave me the answers that I needed. The APSFA not only armed me with detailed medical information that I needed about my relatively unknown condition, but also warned me that getting blood draws at the lab was the only accurate way for me to monitor my condition. I believe that this information saved my life as I would've most likely died if I'd continued using that machine. But that was just the beginning. Over the past 15 years, the APSFA gave me reassurance that I was not alone and provided me with unconditional emotional support. With the APSFA by my side, I've survived five miscarriages and multiple clotting events. I can say unequivocally that this organization will be there to support you when you need it the most. And it starts at the top...Tina Pohlman is one of the most amazing people I've ever had the privilege to know. She is a true survivor, and her tireless passion for this organization, often in spite of and at risk to her own health, is inspirational. I feel very fortunate to have had the APSFA in my life for so long.

3 Joanne W.2

Client Served

Rating: 5

Information provided is extremely helpful, along with supportive group of folks with similar issues. Always very responsive and supportive.

3 Cathie H.

General Member of the Public

Rating: 5

After being diagnosed with APS syndrome aka Hughes Syndrome almost 20 years, I found myself trying to do research and learn all that I could about an autoimmune disorder that I'd never heard of. Whenever I would tell someone that I had APS syndrome, they would ask me what is was. I stumbled across The APS Foundation while online one day, and I got involved with the online site. The foundation has been a great help in providing me with answers to alot of my questions. I also have got a great network of other APS syndrome sufferers who share what it is like to live with APS. Being able to network with these individuals provides a great support system for all parties involved. I'm glad to see that the public and physicians are becoming more aware of what APS syndrome is through the Foundation. Hopefully, that will continue to increase as more people are diagnosed all the time. These Foundation has truly been great for me.

3 louannj59

Client Served

Rating: 5

APS Foundation of America has been a wonderful source of current, science based information that has taught me a lot about my APS diagnosis. It has empowered me to advocate for my own care with my physicians, i.e. initiating Plaquenil use which has been beneficial in decreasing my joint pain and fatigue. Lastly, it has put me in touch with APS Friends and Family Support Group which has truly been a lifeline for me. This group has provided me with much needed support when I have had concerns with regard to my APS diagnosis, but more importantly, the group has provided an appropriate forum for me to give back by offering support to others. Knowing that other people understand or have had similar experiences has helped me to feel less isolated and raised my self-esteem. The group administrator has set and adhered to extremely high standards for this group that truly set it apart as a source of excellent information and positive support for individuals with APS and also family and friends.

Previous Stories
5

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 Heidi K.1

General Member of the Public

Rating: 5

So happy I found this organization. They've been the support I need while going through major health trials! Great organization!!

3

Client Served

Rating: 5

I was diagnosed with APS in 2004. I think I found the website for this organization a year or so later. The support and information provided was invaluable at the time because there was so little out there.

3 Jeana B.1

Client Served

Rating: 5

This place gave me tons of info and stories when i needed it. Its a great resource and help.

3 Lonne K M.

General Member of the Public

Rating: 5

I have learned so much from this website. I was glad I found it as it has helped me since I was diagnosed with APS last spring. All my questions are answered in a timely manner and it’s goid to connect with others that struggle with APS. I actually feel fortunate that I do not have it as badly as others who suffer with PE, DVT, and strokes. Rating is A+

5

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.

6

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.

6 Polly7

Donor

Rating: 5

I have felt so alone. Was having problems finding Doctors. Since joining this foundation I feel part of a family that understands what I'm going through and I'm not alone anymore. So few Doctors know about APS and even fewer have any idea of what to do. Having others to share with has taken some of the fear away and incouraged me to keep trying to find a doctor who understands.

6 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.

6

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.

6 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
5

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!

6

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

7

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.

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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

7

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.

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apsfa 03/05/2015

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

7

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.

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apsfa 06/21/2011

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

6

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.

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apsfa 06/18/2011

Thank you so much for your review!!

5 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!!

5

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.

5

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.

5

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.

5 grantalg

Volunteer

Rating: 5

I love being a part of this group. The support and information I have needed is always available through this group. The information is life saving for those who have to live with Anitphospholipid Antibody Syndrome.

5 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.

5

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!

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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!

4

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!

4

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!

4

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!

4

Volunteer

Rating: 5

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.

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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!

4

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.

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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!

4

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

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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!