Disease, Disorders, Medical Disciplines

APS Foundation of America, Inc.

  • La Crosse, WI
  • http://www.apsfa.org

Mission Statement

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 only 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.

Main Programs

  1. International Congress of Antiphospholipid Antibodies
  2. APS Research
  3. Scholarship/Grant
  4. How Else Are Donations Spent?
  5. APS Awareness
Service Areas

Self-reported

International

Throughout the United States of America and Internationally.

ruling year

2006

President & Treasurer

Self-reported

Ms. Christina Pohlman

Vice President & Webmaster

Self-reported

Ms. Heidi Ponagai

Keywords

Self-reported

antiphospholipid, antibody, syndrome, lupus, stroke, dvt, pe, migraine, hughes, syndrome, miscarriage, thrombosis, embolism, APS, antiphospholipid antibody syndrome, APLS, HSF, APLA, heart, attack

Notes from the Nonprofit

The whole board had a lot of medical problems beyond our control during Fiscal Year 2014 that really slowed us up.

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Also Known As

APSFA, APS Foundation

EIN

20-3085295

 Number

8060733169

Physical Address

624 North 10th Street Suite 4

La Crosse, 54601 3432

Contact

Cause Area (NTEE Code)

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (E01)

Specifically Named Diseases Research (H80)

IRS Filing Requirement

This organization is required to file an IRS Form 990-N.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

 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 20,000 people.
 Donated Printed Publications to Public Libraries – Unknown number of people benefited.
 Invited to several large professional medical conferences.
 Represented at the Annual Venous Disease Coalition Meeting.
 Represented at the American College of Rheumatology Annual Meeting
 Networking with other Non-Profit Organizations and medical professionals.
 Maintained the forum to make it more user friendly – benefiting 80,012 people.
 Maintained HONCode Certification on APS Foundation of America, Inc.
 Maintained HONCode Certification on APS Friends & Support Forum.
 Earned the GuideStar Exchange Seal: Gold Participant.
 Searched for more medical advisors. Added 1 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.
 Maintained several blogs & pages on various social networking sites on various servers to get awareness out – benefited at least 500,000 people.
 Continued 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.
 Donated $2000 to APS ACTION for their ongoing needs in research.
 Fundraisers:
o Café Press
o World APS Day Items
o Bracelet (Silver & Elastic) Fundraiser
 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.) unknown how many people benefited
For Fiscal Year 2015: http://www.apsfa.org/docs/2015%20Year%20in%20Review.pdf
 
For previous years:  Please contact the APSFA at apsfa@apsfa.org

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

International Congress of Antiphospholipid Antibodies

In 2010, we were able to provide a booth at the 13th International Congress on Antiphospholipid Antibodies and were bronze level sponsors. We also were able to send 2 representatives to the congress and sponsored the Young Investigators award. We were thrilled to have representation there and have been invited to attend the next congress which is in Rio de Janerio, Brazil in 2012.
We have estimated that the APSFA will need to raise $20,000 over the next two years to attend the congress. This is a rough estimate as the date and location of the congress have yet to be announced.
Attending these congresses and other events of this type allows the APSFA to build a positive relationship with physicians and APS patients from all over the world.

Category

None

Population(s) Served

General Public/Unspecified

None

None

Budget

$20,000.00

Program 2

APS Research

We would also like to raise monies to assist in funding research. In the past, we have given money to research groups such as The Rare Thrombotic Disease Consortium, Genetic Alliance, and AARDA Autoimmune Summit. We have also sponsored medical students to attend specialized training dealing with APS. However, we have never raised money specifically for research.
Over the course of the next 5 years, we will be setting aside 10% of our donations for Antiphospholipid Antibody Syndrome (APS) research. This money will go to a researcher, group of researchers or facility that is doing APS research. There will be an application process for those who are interested in our funding. We will review it as a board of directors, with 2 medical advisors that do not have a conflict of interest in the funding and 2 outside APSFA volunteers.

Category

None

Population(s) Served

General Public/Unspecified

None

None

Budget

$5,000.00

Program 3

Scholarship/Grant

In 2011, the APSFA plans to award a college aged student a $1,000 scholarshithere may be more than one awarded per year. This is something we would like to do yearly. This will be a onetime, non-renewing scholarship that will be granted to someone who is going to Medical or Nursing School. There will be an application process for those who are interested in this scholarshiapplication process and how the recipient will be chosen.

Category

None

Population(s) Served

General Public/Unspecified

None

None

Budget

$2,000.00

Program 4

How Else Are Donations Spent?

Your donations also fund our yearly foundation expenses. These include: annual registration fees, legal fees, accountant fees, bank fees, insurance, postage and printing fees, and the APS Friends & Support Forum fees. Services such as phone (including long distance), internet connections, office space and storage are donated by our volunteers.
We research ways (and use coupons where we can!) to save money on administrative office supplies & printing expenses so we can apply as much of our donations towards our goals. We have already done so by selling awareness items through Cafe Press and Zazzle which totally eliminates overhead costs.
We have also saved hundreds of dollars by creating our own brochures, newsletters, logos, awareness designs, and website. Since we are completely volunteer run we don't have any payroll costs. We also do not use professional fundraisers to fundraise for us.

Category

None

Population(s) Served

General Public/Unspecified

None

None

Budget

$7,000.00

Program 5

APS Awareness

Founded in 2005, the APS Foundation of America, Inc. (APSFA) is a volunteer run, 501(c)3 public charity. Without your generous donations, the APSFA could not continue to provide APS patients and their families with the information on our foundation page, the support on our support forum or information packets for patients, hospitals/clinics and conferences, which we send out free of charge on request.
In addition, we are developing a strategic plan for the future course of the APSFA and plan to raise money towards our long term goals.

Category

None

Population(s) Served

General Public/Unspecified

None

None

Budget

$10,000.00

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    Recommendations:
     Continue to find more avenues for fundraising.
     Get back to publishing quarterly newsletters.
     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 advisors that truly want to help.
     Continue to attempt 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 7, including one medical advisor & 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.
     Consider spending the money to get professional press releases written and sent out at $1000+ each. We thought our followers would help us so we could use our donated dollar towards research needs but without awareness we have nothing.
     Consider working with the FDA on getting a Black Box Warning regarding the Finger Stick Machines and APS since the vendors and manufactures do not openly disclose this.
     Find a webmaster to maintained our webpage better; consider paying for one
     Find a graphic designer
     Volunteers that truly want to help
  2. What are the organization's key strategies for making this happen?
    The APSFA's strategies for accomplishing its long-term goals of awareness, education and support of those with APS, include three main parts- fundraising, promotion/publication, and advocacy. For the first part- fundraising- we have implemented a full spectrum of options for our members, supporters, and volunteers to run their own fundraising drives, give individual donations, or to make a purchase of APSFA merchandise which the proceeds go back to the organization. We believe that by making fundraising a central part of involvement with the APSFA, we help spread our message on a more personal level as we also earn the funds which will lead us to new growth as an organization and advancing our primary goals as an organization. Our second strategy of promotion and publication is to get information on APS out to the media, the public and to those who have APS and their families. To this end our mission is to have APS become a household name in the coming years. By volunteers and members publishing articles, blogging, vlogging, being hosted on syndicated radio, the APSFA buying air-time for PSA's, and many more ends we believe we will accomplish this goal. Lastly, advocacy for our clients is the most important human impact the APSFA has. Because we were founded by members who have APS, we truly know the struggle of getting a correct diagnosis and treatment plan, and we currently help those with APS with emotional support, and while we do not give medical advice we do give practical advice on how to approach their diagnosis and share general information of our experiences with getting proper diagnosis and treatments for APS.
  3. What are the organization's capabilities for doing this?
    We currently have a relatively limited budget, but that being said, we have low overhead and an endless potential for growth. Our biggest assets are our human assets and our potential to grow these assets exponentially in the coming years. We currently are restructuring our staff and are also working on implementing an intern program with two local universities and coming out of that we should have an extreme increase in our capacity to fundraise and bring awareness to the APSFA and APS. Lastly, bringing on more dedicated medical advisers is going to be a critical part of our mission for advocacy and we are currently implementing a plan to bring more dedicated advisers on board with APSFA.
  4. How will they know if they are making progress?
    In tracking our progress we have established both qualitative and quantitative indicators to assess whether or not we are achieving our goals successfully. For financial/fundraising growth, exclusively we are quarterly goal setting and tracking to see if we made our goal for that period. For our awareness and advocacy goals we have quantitative metrics such as tracking meta-data on our forums and webpage, and quantitative analysis such as follow up surveys on client outcomes. Though we haven't currently employed it yet, in the future we will enlisted polling firms to check to to see the relative level of awareness concerning APS.
  5. What have and haven't they accomplished so far?
     Represented at the American College of Rheumatology Annual Meeting
     Networking with other Non-Profit Organizations and medical professionals.
     Maintained HONCode Certification on APS Foundation of America, Inc.
     Maintained HONCode Certification on APS Friends & Support Forum.
     Earned the GuideStar Exchange Seal: Gold Participant.
     Searched for more medical advisors. Added 1 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.
     Continued 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.
     Donated $2000 to APS ACTION for their ongoing needs in research.
     Fundraisers: Café Press World APS Day Items Bracelet (Silver & Elastic)
     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.) unknown how many people benefited
    Recommendations:
     Continue to find more avenues for fundraising.
     Get back to publishing quarterly newsletters.
     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 advisors that truly want to help.
     Continue to attempt 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 7, including one medical advisor & 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.
     Consider spending the money to get professional press releases written and sent out at $1000+ each. We thought our followers would help us so we could use our donated dollar towards research needs but without awareness we have nothing.
     Consider working with the FDA on getting a Black Box Warning regarding the Finger Stick Machines and APS since the vendors and manufactures do not openly disclose this.
     Find a webmaster to maintained our webpage better; consider paying for one
     Find a graphic designer
     Volunteers that truly want to help
Service Areas

Self-reported

International

Throughout the United States of America and Internationally.

Social Media

Blog

Funding Needs

Without your donations, the APS Foundation of America, Inc would still be just a support forum and informative website. We've grown immensely in the past 5 years and we hope, with your support, we will be able to continue to grow as a foundation and bring much needed awareness to APS. Please note, we generally do our book keeping on a quarterly basis, which may delay the posting of donor names. Tina does our book keeping and she is also an APS & Lupus patient. Your patience and understanding is greatly appreciated!

External Reviews

Source: greatnonprofits.org

The review section is powered by Great Nonprofits

Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

APS FOUNDATION OF AMERICA INC
Fiscal year: Jan 01-Dec 31

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Operations

The people, governance practices, and partners that make the organization tick.

APS Foundation of America, Inc.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2014
  • Board Chair, Board Co-Chair and Board Members
  • Access to the GuideStar Community
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

President & Treasurer

Ms. Christina Pohlman

Vice President & Webmaster

Ms. Heidi Ponagai

BIO

Education: College Graduate in Public Health Education. Many EMS and Emergency Management Credentials.Occupation: President, Founder & Executive Director of the APS Foundation of America, Inc. (APSFA). Christina was a Health & Safety Instructor for 16 years but due to medical problems had to stop teaching. Christinna provided First Aid, CPR, etc through the Emergency Care and Safety Institute and American Red Cross. This organization is sponsored by the American Academy of Orthopedic Surgeons and American College of Emergency Physicians. Former team member of the United States Coast Guard.
 
Christina is both a Antiphospholipid Antibody Syndrome (APS) and Lupus patient.

STATEMENT FROM THE President & Treasurer

"Tina is the President, Executive Director, Co-Founder of the APS Foundation of America, Inc. She is an Lupus & APS Patient and is finishing her MS Public Health Education.

She was a Health & Safety Instructor for 16 years but due to medical problems had to stop teaching. She provided First Aid, CPR, etc through the Emergency Care and Safety Institute. This organization is sponsored by the American Academy of Orthopedic Surgeons and American College of Emergency Physicians. Former team member of the United States Coast Guard.

Founded in 2005, the APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services."

Governance

BOARD CHAIR

Ms. Christina Pohlman

NA

Term: June 2005 -

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?