APS Foundation of America, Inc.
Antiphospho.....what?!?!
Programs and results
What we aim to solve
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
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 six scholarships to the Silvia Pierangeli Young Scholar Award at the 17th International Congress on Antiphospholipid Antibodies. We were thrilled to have representation there and have been invited to attend the next congress which in 2022 located in Cordobo, Argentina.
We have estimated that the APSFA will need to raise $10,000 over the next three years to meet our obligations for the 18th International Congress in Kyoto, Japan. We will also be providing several Silvia Pierangeli Young Scholar Awards. We will be attending virtually to defray our costs and spend the donated dollar wisely.
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.
Anitphospholipid Syndrome Research (Adult and Pediatric)
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.
Scholarship/Grant
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.
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, 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.
Antiphospholipid Syndrome 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.
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)
External reviews

Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber 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
Holding steady
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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
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.
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
It is difficult to find the ongoing funding to support feedback collection, It is difficult to get honest feedback from the people we serve, No way to mass message on Social Media.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 07/21/2023
Ms. Christina Pohlman
NA
Term: 2005 -
Ms. Kim Nault
NA
Term: 2015 -
Todd Ponagai
NA
Heidi Ponagai
NA
Christina Pohlman
NA
Kim Nault
NA
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 07/16/2021GuideStar 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
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.