APS Foundation of America, Inc.

Rating: 4.69 stars   39 reviews

Issues: Health

Location: Post Office Box 801 La Crosse WI 54602 USA

Mission: Founded in 2005, the APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research, and patient services for Antiphospholipid Antibody Syndrome (APS) in an effective and ethical manner. Our Goal Is: To offer understanding and support to individuals, family, friends, and care givers of Antiphospholipid Antibody Syndrome; To offer information about and education on Antiphospholipid Antibody Syndrome; To support research regarding Antiphospholipid Antibody Syndrome by keeping the latest information available and referring people to such agencies who do research; To raise funds to provide information and education through public donations, grants, fundraisers, sponsorships, and bequests; and To bring national focus to Antiphospholipid Antibody Syndrome in the United States. The APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated specifically to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, and young strokes and heart attacks. We are a volunteer-run, community-based, non-profit organization.
Results: 2010 Year in Review (These are in no particular order.) * Maintained 501(c)3 Non Profit Status granted under Section 170, 2055, 2106, 2522. We also were granted an advanced ruling as a Public Charity. * Filed Taxes. * Registered to solicit in the states we were required to do so. * Updated APSFA Booklet and reprinted it. * Updated APS Foundation of America, Inc brochure and reprinted it. * Made all brochure & booklets that have bibliographies available – available online. * Published quarterly newsletters that are available free to the public on our website – benefited at least 400,000 people. * Donated & Mailed Brochures & Booklets –benefited at least 20,000 people. * Donated Printed Publications to Public Libraries – Unknown number of people benefited. * Invited to several large professional medical conferences. * Attended 13th International Congress on Antiphospholipid Antibodies. * Bronze Sponsor for the 13th International Congress on Antiphospholipid Antibodies. * Sponsored & provided the prize for the winner of the Young Investigators Award presented at the 13th International Congress on Antiphospholipid Antibodies. * Sponsored the Autoimmune Diseases Summit: The Global State of Autoimmunity Today. * Attended the What Every American Needs to Know about Autoimmune Disease sponsored by the AARDA in both MA & MO. * Represented at the Annual Venous Disease Coalition Meeting. * Represented at the UCDavis Health System: Update on the Management of Thromboembolic Disorders. * Represented at the American College of Rheumatology Annual Meeting * Represented at the Lupus Foundation of America, Philadelphia Tri-State Chapter Living Well With Lupus Symposium. * Represented at the AARDA Global Summit: The Global State of Autoimmunity Today at the Church Center for the United Nations in New York. * Became members of the Coalition to Prevent Deep Vein Thrombosis. * Networking with other Non-Profit Organizations and medical professionals. * Maintained our Webpage –benefiting 142,143 people based on the index page. * Maintained the forum to make it more user friendly – benefiting 189,281 people. * Maintained HONCode Certification on APS Foundation of America, Inc. * Maintained HONCode Certification on APS Friends & Support Forum. * Earned the GuideStar Exchange Seal: Partner in Trust. * Awarded “The Hope Reward”. Our website now joins a select group of health websites that adheres to the highest standards of health information quality, ethical behavior, and respect for consumer privacy. * Working on obtaining the Better Business Bureau Accredited Charity Status. * Maintained several blogs & pages on various social networking sites on various servers to get awareness out – benefited at least 500,000 people. * Launched June 9th as World APS Awareness Day. * Continued June as APS Awareness Month. * Launched press releases – benefited at least 50,000 people. * Launched Radio Public Service Announcements – benefited at least 1,000,000. * Fundraisers: o Café Press – approx 370 items sold o World APS Day Items – approx 30 items sold o APSFA’s 5 Year Birthday Party – 17 participated o Holiday Related: * Giving Tree – 32 participated * Café Press Collectors Edition – 34 participated * Made Press in 3 different media venues that we are aware of – at least 100,000,000 people benefited o House, MD – “Instant Karma” (original air date: 10/15/09) – benefited at least 16,000,000 people. o Mystery Diagnosis – “Falling Through the Cracks” (re- aired several times, original air date: 3/6/2006) - unknown how many people benefited o The Beatles Network (APS Awareness month world wide awareness.) * Forum Information: o Average Number of Visitors: 3,971/month - High: 4,460 - Low: 3,560 o Average Number of Visits: 10,493/month – High: 12,183 – Low: 8,683 o Average Max Online: 17/month – High: 28 – Low: 10 o Average Page Views: 33,502 – High: 41,595 – Low: 27,073 o Average Number Posts: 583/month – High: 970 – Low: 228 o Average Number of Private Messages: 143 – High: 241 – Low: 83 o Number of Participants: 1,962 Recommendations: * Continue to find more avenues for fundraising. * Continue to collaborate with more organizations (both lay & professional). * Attend or have materials available for more conferences. * Apply for more grants. * Continue to search for more medical advisers. * Continue to attempt getting APS mentioned in more publications, including magazines. * Continue to making more videos and learn how to make podcasts. * Consider tapping in more social networking sites. * Consider going to a Board of Directors of 5, including one medical adviser & one public non-APS person. * Consider making June 9th World APS Awareness Day formally via a bill through Congress. * Consider making June APS Awareness Month formally via a bill through Congress. * Consider making a Scholarship fund for those going into the Medical Field. * Consider making a formal Scholarship fund for APS Research.
Geographic areas served: USA
2010 Top-Rated Nonprofit
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EIN 20-3085295
608-782-2626
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Community Reviews

Rating: 5 stars  

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.

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

Provided my the necessary materials to leave in Drs offices. Also had the needed information to argue a treatment with my care givers.

If I had to make changes to this organization, I would...

na

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Rating: 5 stars  

11 people found this review helpful

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.

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

improving awareness of the disorder within the medical community via newletters and distribution of cited medical information from national conferences.

If I had to make changes to this organization, I would...

like to help them with more fundraisers to spread APS awareness.

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

the amount of information I've gathered on my blood disorder.

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

understanding, supportive and very knowledgeable

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

support APS research world wide.

Ways to make it better...

some people on the forum followed basic forum etiquette. I found that there were some people who posted hurtful comments. These type of things are not allowed on any forum. Those people were banned and that made the forum a better, and safer place.

In my opinion, the biggest challenges facing this organization are...

fighting people who have a personal vendetta against the foundation.

One thing I'd also say is that...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

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

Rating: 5 stars  

10 people found this review helpful

My story starts when I was a teenager, I woke up in the middle of the night with screams of pain. My head felt like it was going to explode, When My parents placed a cold washcloth on my forward I was finally able to close my Eyes. As I layed there, There were what seemed like fireworks going off in my head. I believe this was what I believe to be my 1st TIA. At this time my mother took me to the Doctor, There were no answers, only questions. I showed up to have "some kind o venereal disease. I was only 13 at the time, very much a Virgin. My parents did not know what to think. My mother at this time was having one of the first Hip Replacements at USC. I believe she also had APS, first diagnosed as childhood RA. She had been on prednisone for most of her life. She had been diagnosed with diverticulosis. I believe this was due to her Lupus and the combination of the cortisone. I am now going to flash forward to my 1st born son. For some reason I started labor at 7 months. He was born at 5.5 pounds, Incredibly healthy yet Jaundice. At that time no red flags went up to any of my Doctors. I have been a dance Educator, and a certified Aerobic step Instructor. At age 47 I had my 1st Stroke, and no answers to the reason why. Finally my neurologist sent me to UCSF where they finally diagnosed with APS. This is when I became aquainted APS Foundation. I am so glad they were there. I live in far Northern California, Arcata CA. There is no information locally about this disease. Because of APS & Facebook I have been able to educate my friends and Family about this Disease. I don't know what I would have done if they were'nt a strong Non-Profit. God Bless thier staff & doctor's!

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

I am waiting to have knee surgery. APS patience need to be carefully bridged off the Coumadin, One staff recently sent me the correct protocols for Surgery. Turns out the surgeons had no Idea of how to bridge me. Wrong Lovenox Injections.

If I had to make changes to this organization, I would...

Keep up the Face book, Twitter, and have more staff on the West Coast. At least the bay area, More seminars on the west coast.

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

The most recent Information on APS.

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

Incredible!

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

To start having State sites

Ways to make it better...

I could reach out to more APS Patience's locally

In my opinion, the biggest challenges facing this organization are...

A Bad economy.

One thing I'd also say is that...

Keep up the fantastic work!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-1-01

Was this review helpful? 

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

Rating: 5 stars  

15 people found this review helpful

When my husband was diagnosed with Antiphospholipid Antibody Syndrome, we felt helpless and had no where to turn in the USA for support. Most APS patients feel that way when first diagnosed...alone, helpless, confused, scared. The APSFA helps them realize they are not alone - there are others out there who live with this disease, the same symptoms and the same struggles with doctors. The APSFA strives to provide the most up to date and cited information for APS patients. We spend countless hours working behind the scenes so that the website is accurate and the support group is a save haven for APS patients. I have made many good friends through the APSFA and the support forum and have found comfort in the fact that we are not alone, others feel the same way and when you're diagnosed with an autoimmune disease like APS, that's important.

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

the numerous people who come to the support forum or email us and thank us for the work we've done and for the information on our site...makes it all worth it in the end to be helping others!

If I had to make changes to this organization, I would...

wish we had more committed volunteers.

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

the extensive knowledge I've learned about the disease, the courage to change my husband's doctors when necessary and the great friends I've made!

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

helpful, dedicated, compassionate, and overall great people.

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

have multiple chapters, face to face support groups, and attend seminars, conferences and congresses on a regular basis which would allow us to help more APS patients nationwide.

Ways to make it better...

we had more volunteers.

In my opinion, the biggest challenges facing this organization are...

donations are down due to the economy, which hinders us from attending events and helping APS patients. Also we need more professionals (Physicians) to help us with articles for our newsletter.

One thing I'd also say is that...

if the volunteers of the APSFA continue to work as hard as we have and stay focused and dedicated, we will be able to accomplish everything we set out to do!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

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

Rating: 5 stars  

10 people found this review helpful

I have been diagnosed with APS since 2003, The volunteers have championed the need for a US chapter for APS until now we have gleened information and support from the UK. Now we can really start pushing for the Medical Community in the US to become much better educated on this disease. Thank you all for your unwavering dedication.

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

I have participated in spreading literature and awarness.

If I had to make changes to this organization, I would...

have not found any need for changes

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

The dedication to getting the word out about Antiphospholipid Antibody Syndrome in the United States

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

Very supportive and knowledgable

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

Sent key people to APS congresses to be educated

Ways to make it better...

NA

In my opinion, the biggest challenges facing this organization are...

Getting the medical community to realize we have special needs and to come around to the medical awarness of the UK

One thing I'd also say is that...

This has been to long in getting off the ground. But glad it has finally happened.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 

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