APS Foundation of America, Inc.

Antiphospho.....what?!?!

aka APSFA, APS Foundation   |   La Crosse, WI   |  https://www.apsfa.org

Mission

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.

Ruling year info

2006

President & Treasurer

Ms. Christina M Pohlman

Main address

Post Office Box 801

La Crosse, WI 54602 USA

Show more contact info

EIN

20-3085295

NTEE code info

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.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are working on getting more volunteers on board and delegating the responsibilities out for the smaller tasks such as the newsletters and graphics. It is a work in progress, but we are going to give everyone a chance. We have found a new webmaster and are looking forward to those changes to come. We now need to tackle the fundraising issues as to why they are happening.

Our programs

SOURCE: Self-reported by organization

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

International Congress of Antiphospholipid Antibodies

In 2022, we were able to provide five scholarships to the Silvia Pierangeli Young Scholar Award at the 17th International Congress on Antiphospholipid Antibodies and provide translation services. We also spoke at the ICAPA Patient Session. We were thrilled to have representation there via a virtual booth and have been invited to attend the next congress.

We have estimated that the APSFA will need to raise $10,000 over the next three years to attend the 18th International Congress. We will also be providing several Silvia Pierangeli Young Scholar Awards.

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 and keeps us abreast of what is happening with APS research and allows our clients voices to be heard.

Population(s) Served
People with diseases and illnesses
People with disabilities

We would also like to raise monies to assist in funding research. In the past, we have given money to research groups such as APS ACTION, CARRA, APSCORE, The Rare Thrombotic Disease Consortium, Genetic Alliance, EURORDIS, 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 in the form of a grant.

Over the course of the next 5 years, we will be setting aside 10% of our donations for Antiphospholipid 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.

Population(s) Served
People with diseases and illnesses
People with disabilities

In 2022, the APSFA plans to award a college aged student a $1,000 scholarship. Pending funding for this scholarship, there may be more than one awarded per year. This is something we would like to do yearly. This will be a one time, 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 scholarship. More information will be available soon where we will explain the qualifications, application process and how the recipient will be chosen.

Population(s) Served
Academics
People with diseases and illnesses

Your donations also fund our yearly foundation expenses. These include: annual registration fees, legal fees, accountant fees, bank fees, insurance, postage and printing fees, rent share and cellphone. Services such as internet connections, electric, sewer, water, lawn & snow removal and heat are donated by our volunteers. Since, we are completely volunteer run we don’t have any payroll costs. We also do not use professional fundraisers to raise funds for us. We have also saved hundreds of dollars by creating our own brochures and newsletters.

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 misson and goals. We have already done so by selling awareness items through our CafePress store and our Zazzle store which totally eliminates overhead costs.

If you have more ideas on how to save, feel free to contact us. We always welcome more ideas on how to save money.

Population(s) Served
People with diseases and illnesses
People with disabilities

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.

Population(s) Served
People with diseases and illnesses
People with disabilities

Where we work

Awards

Outstanding Website Award 2005

Disability Network - http://www.disabilitynetwork.com/

Hope Award 2007

IBS Tales - http://www.ibstales.com/

"The Hope Reward" 2010

Colon-Cancer.net http://www.colon-cancer.net/

Honorable Mention Awardees for the World Thrombosis 2019 Ambassador of the Year Award 2019

International Society on Thrombosis and Haemostasis (ISTH)

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of participants engaged in programs

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, People with psychosocial disabilities, Chronically ill people, Terminally ill people, Pregnant people

Related Program

Antiphospholipid Syndrome Awareness

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

The APS Foundation of America, Inc will use the number of people participating in the APS Friends and Family Support Group as the metric as participants engaged in this program.

Number of online groups served

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Pregnant people, Terminally ill people, People with physical disabilities, People with psychosocial disabilities

Related Program

Antiphospholipid Syndrome Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The APS Foundation of America, Inc has one support group on Facebook at https://www.facebook/groups/apsfriendsandfamily People joining this group is growing steady as shown in another metric.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, People with psychosocial disabilities, Chronically ill people, Terminally ill people, Pregnant people

Related Program

Antiphospholipid Syndrome Awareness

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

The APS Foundation of America, Inc Facebook page has been steadly growing. It is the source for the latest information on Antiphospholipid Syndrome and our program updates besides our website.

Number of testimonies offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, People with psychosocial disabilities, Chronically ill people, Terminally ill people, Pregnant people

Related Program

Antiphospholipid Syndrome Awareness

Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

The APS Foundation of America, Inc has testimonies shared at Great Nonprofits located at https://greatnonprofits.org/org/aps-foundation-of-america-inc

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Researchers, Students, Chronically ill people, Young adults, Children

Related Program

Anitphospholipid Syndrome Research (Adult and Pediatric)

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The APS Foundation of America, Inc donates money to APS ACTION and CARRA for Antiphospholipid Syndrome research purposes. While the amount of grants is holding steady the total amount is more.

Total dollar amount of scholarship awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, Chronically ill people, Pregnant people, Researchers, Students

Related Program

International Congress of Antiphospholipid Antibodies

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The APS Foundation of America, Inc give out the Silvia Pierangeli Young Scholar Award at the International Congress of Antiphospholipid Antibodies. This meeting is held every three years.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

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. Considering doing Facebook Live Chats. 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. Consider working with the FDA and getting legislation making a Black Box Warning regarding the Finger Stick Machines and APS since the vendors and manufactures do not openly disclose this. Find dedicated volunteers. Find pro-bono Wisconsin Attorney

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.

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.

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. Considering doing Facebook Live Chats. 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. Find volunteers that truly want to help. Discontinue WOWBB and just use Facebook for support group.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The APS Foundation of America, Inc serves individuals, family, friends, and care givers of Antiphospholipid Syndrome. We also work with researchers and medical doctors regarding Antiphospholipid Syndrome.

  • How is your organization collecting feedback from the people you serve?

    Suggestion box/email, phone calls & Inbox messaging,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    The APS Foundation of America, Inc received feed back that the participants did not like holistic and "fake cures" pushed upon them by other users. We instituted a no "fake cures" and holistics policy on our support board after discussion it with our medical advisors, moderators and Board of Directors and in our cliental situation it can cause harm.

  • With whom is the organization sharing feedback?

    The people we serve, Medical Advisors, Researchers,

  • How has asking for feedback from the people you serve changed your relationship?

    We usually find that participants are happy that we take action with the action with the feed back that they provide, as it tends to be the majority feeling that way. The participants feel good that they can approach us with suggestions and we are open to ideas.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get honest feedback from the people we serve, No way to mass message on facebook.,

Financials

APS Foundation of America, Inc.
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Operations

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

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

APS Foundation of America, Inc.

Board of directors
as of 05/01/2022
SOURCE: Self-reported by organization
Board co-chair

Ms. Christina Pohlman

NA

Term: 2005 -


Board co-chair

Ms. Kim Nault

NA

Term: 2015 -

Todd Ponagai

NA

Heidi Ponagai

NA

Christina Pohlman

NA

Kim Nault

NA

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/17/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/16/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.