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  

8 people found this review helpful

I have been a part of APS for a little under a year. They have provided numerous resources to myself and my father as to his condition. I have been befriended by many and have used their resources to give my father a better quality of life.

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

my purchases to help the organization with finances. I have also gotten a lot of information from their facebook group.

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

not do anything! It runs perfectly the way that it is.

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

the amount of information that they provide about this condition

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

Tina and she is AMAZING! We are both from Wisconsin and have a lot of common.

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

help more people. They could put money into more research and become an even larger support group!

Ways to make it better...

there is nothing they could do better for me.

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

Money

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

Every person that I've had the pleasure of speaking with from APS have been professional and very understanding. It feels as if I'm part of a huge family.

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  

8 people found this review helpful

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

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

I have learned things I need to ask my doctors and things I need to look out for. Also when you have a question,, they help you get the answers

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

the caring staff.

How frequently have you been involved with the organization?

One time

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

After losing a son at 18 weeks gestation and being told I had APS, I was very scared of what it all meant. One doctor told me I should never try to have children and another told me I didn't know what I had because they couldn't find the APS diagnosis in their medical database. I found this website while doing my own research and was so glad that I did. I was able to talk to other people who had gone through similar experiences as well a those who have been affected by APS much more than I have. I have gotten a much better understanding of symptoms and what to watch for in the future. Through the help and information on this site, I was able to have a healthy and safe pregnancy.

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

the APS support forum-I received lots of information and support as I went through a pregnancy.

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

helpful staff members and lots of information on many different aspects of APS and how it affects your life.

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

very kind and friendly.

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

help so many people and doctors with awareness and education. Also help fund research.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-4-01

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  

13 people found this review helpful

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.

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

the APS support forum, Facebook

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

change absolutely nothing!

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

the level of care and concern that the APS staff and members have for each other.

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

AWESOME, supportive, and wonderful people!

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

provide much more awareness of APS and provide grants for research into the causes and potential treatments for this disease.

Ways to make it better...

my experiences have always been great!

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

I believe that the APSFA could always use more funding to further their cause.

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

this is a great non-profit organization! I would strongly recommend the APSFA to anyone who has been diagnosed, has a family member or friend who has APS, or is looking for information about APS.

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 totally support your charity even though I do not have APS. I feel you are doing a wonderful and excellent job educating the general public and helping people. Take Care, Iris Springflower

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

Facebook

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!

Rating: 5 stars  

11 people found this review helpful

As the president of the APS Foundation of America, Inc, I would like to share the accomplishments of 2009. Every year we work harder to get awareness out and work on education to the public and medical community. - 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 - 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 200,000 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. - Networking with other Non-Profit Organizations and medical professionals - Maintained our Webpage –benefiting 76,839 people based on the index page. - Maintained the forum to make it more user friendly – benefiting 183,844 people - Maintained HONCode Certification on APS Foundation of America, Inc. - Maintained HONCode Certification on APS Friends & Support Forum. - Started and maintain several blogs on various servers to get awareness out – benefited at least 200,000 people - Launched press releases – benefited at least 50,000 people - Launched Radio Public Service Announcements – benefited at least 5,000 - Fundraisers - Café Press – approx 400 items sold - Holiday Stuff - Giving Tree – 38 participated - Café Press Collectors Edition – 3 participated - Made Press in 5 different media venues that we are aware of – at least 100,000,000 people benefited - House, MD – “Instant Karma” (original air date: 10/15/09) – benefited at least 16,000,000 people. - Death of Tom Sparks due to APS – picked up by AP Wire - unknown how many people benefited (Picked up on TV, radio, internet, newspapers & social networking sites) - Mystery Diagnosis – “Falling Through the Cracks” (re- aired several times, original air date: 3/6/2006) - unknown how many people benefited - Number of Friends of APSFA: 35 benefited

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

a great sense of accomplishment in helping others and spreading the word about APS. I have also received advocacy from our Medical Advisers and volunteer Social Worker. I have also made some great friends!

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

find more volunteers and professionals willing to step up and donate their services.

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

making new friends and knowing I am making a difference in the world regarding APS Awareness and helping APS patients & educating medical personnel.

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

great and easy to work with.

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

make chapters in every state and be able to afford to attend more conferences.

Ways to make it better...

we had more committed volunteers.

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

financial. With the economy being tight, donations are lower and makes it hard for us to do what we need to do and attend what we want to attend.

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

the staff, volunteers, medical advisers, and board of directors are a hard working bunch. I am proud to work with them.

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?