PLATINUM2024

Adult Congenital Heart Association Inc

aka ACHA   |   Media, PA   |  www.achaheart.org

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Adult Congenital Heart Association Inc

EIN: 04-3447959


Mission

The mission of the Adult Congenital Heart Association is to empower the congenital heart disease community by advancing access to resources and specialized care that improve patient-centered outcomes.

Ruling year info

1999

President & CEO

Mark Roeder

Main address

280 North Providence Road Suite 6

Media, PA 19063 USA

Show more contact info

EIN

04-3447959

Subject area info

Health

Heart and circulatory system diseases

Population served info

Adults

NTEE code info

Heart and Circulatory System (G43)

Birth Defects (G20)

Alliance/Advocacy Organizations (E01)

What we aim to solve

SOURCE: Self-reported by organization

Congenital heart defects (CHD) affect 1 in every 100 births in the US. CHD patients are now living longer than ever and require lifelong specialized care. Yet, less than 10% of all patients are receiving the care they require due in part of lack of awareness of this need and due to a lack of providers to meet their specialized needs.

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?

Education and Outreach

Through the Heart to Heart Program, ACHA offers a variety of educational resources to ensure that the adult living with Congenital Heart Disease has the tools they need to protect and improve their lifelong health and well-being

Population(s) Served
Adults

The Adult Congenital Heart Association advocates for improved data collection, research, secondary prevention and treatment options to improve and prolong the lives of those living with congenital heart disease.

Population(s) Served
Adults

ACHA’s Research Program aims to build partnerships with national CHD researchers to further expand our understanding of ACHD issues, conduct and promote research that engages patients and other stakeholders and develop strategies that unite patients with medical professionals to promote patient empowerment and lifelong cardiac health surveillance.

Population(s) Served
Adults

Where we work

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
Related Program

Education and Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

ACHA hosts Walk for 1 in 100 events throughout the country. These events bring together providers, patients, and family members and friends to spread awareness of ACHD through community events.

Number of research studies funded

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

Chronically ill people

Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Since 2019, ACHA has funded over $500,000 in research projects related to adults living with Congenital Heart Disease.

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.

ACHA focuses on lifelong care of the millions with CHD from infancy and youth to adulthood and into advanced age. We are the voice and strength of CHD and the go-to resource for our community of patients, their loved ones, and medical providers, as well as for the media, legislators, advocates and donors. The goal of ACHA is that all CHD patients receive the lifelong care the require from centers that are able to meet their specialized needs.

We will improve access to quality care for CHD patients.
ACHA worked with leading providers of adult congenital heart disease care to develop criteria for the ACHD ACHD Accreditation Program. This is a crucial area for advancing and standardizing the quality of care for ACHD. Every person with CHD needs access to specialized care regardless of where they live. This program is meant to be a transparent resource that every ACHD provider can use to elevate the level of comprehensive care at their center.

We focus on advocacy.
ACHA promotes advocacy through our volunteer network. Whether it is through outreach to elected officials, telling one's story through letters to members of Congress, or joining ACHA on Capitol Hill, ACHA is the go-to organization when it comes to advocating for those living with ACHD.

We focus on research.
ACHA launched its research program in 2019 and as of December 2023, ACHA has invested more than $500,000 to fund 18 research investigations. ACHA continues to budget for further research grants annually. Our program is unique in that we are the only patient advocacy organization focused on studies that impact the adult CHD population (neurodevelopment, mental health, pregnancy, co-morbidities as one ages with CHD, etc.).

We will improve the awareness of CHD.
ACHA hosts annual Walk for 1 in 100 events throughout the country, as well as regional conferences, local CHD meet ups, and other volunteer-led events. Being in the community allows patients to learn more about ACHD and the importance of lifelong care.

ACHA also has a comprehensive website with a wide range of educational materials in both English and Spanish. A primary resource on the website is a clinic directory that allows patients to find quality care in their region. This is the most accessed area of our website. In 2023, ACHA added a Patient Resource Directory that provides information, resources, and tools for ACHD patients who might experience barriers when accessing recommended specialized care. These searchable resources are provided to help patients take an active role in their cardiac care. Patients can search for topics in areas such as ACHD/CHD organizations, other health advocacy organizations, access to care, and diversity, equity and inclusion. ACHA is also active on primary social media channels.

ACHA continues to fundraise at individual, institutional, and corporate levels. Diversifying our donor base allows us to continue our mission and serve the CHD population in ways that meet our current goals. Our staff has many years of programming experience both within the CHD community, as well as in other nonprofit settings, allowing us to both meet our goals as well as to think bigger about the future.

ACHA has a number of fundraising tools and campaigns used throughout the year. In addition to this, we have developed several partnerships with businesses that allow us to future our mission through expanded Heart to Heart Peer Mentor Program activities, awareness campaigns, attendance at outside conferences, and hosting of regional conferences, among others.

We have an engaged Board of Directors, Patient and Family Advisory Board, and Medical Advisory Board who allow us to focus on goals, further our mission, and expand our ability to fundraise on an individual and corporate basis.

We will improve access to quality care for CHD patients.
There are currently 51 ACHA ACHA Accreditation Program-accredited centers throughout the US. There are approximately 5 new centers in the pipeline to become accredited in 2024.

We focus on advocacy.
ACHA played a leading role in advocating for the passage of the Congenital Heart Futures Act in 2010 as part of the Affordable Care Act and for the Congenital Heart Futures Reauthorization Act (CHFRA) of 2017. This legislation authorizes up to $10 million in federal funding to study and collect data on congenital heart disease through the U.S. Centers for Disease Control and Prevention, and it directs the National Institutes of Health to report on ongoing research efforts in CHD. ACHA annually advocates for funding CHFRA at the highest authorized level, and in FY2023 Congress increased funding for the fifth straight year, to $8.25 million. Because federal funding expires at the end of FY2024, ACHA will mobilize this year for reauthorization to ensure continued support for people with CHD. ACHA will support Capitol Hill visits and in-district visits in 2024 as we continue to push for legislation and policies that improve health and psychosocial outcomes for CHD patients. This includes addressing the ACHD workforce shortage by identifying barriers to training new fellows to follow an ACHD career path.

We focus on research.
ACHA launched its research program in 2019 and as of December 2023, ACHA has invested more than $500,000 to fund 18 research investigations. ACHA continues to budget for further research grants annually. It is anticipated that ACHA will award up to $100,000 in new funding in 2024.

We will improve the awareness of CHD.
ACHA hosted 10 in-person Walk for 1 in 100 events in 2023. There are currently 15 events planned in 2024 and 20 in 2025. There are also in-person regional conferences being planned for 2024, bringing patients and providers together to learn with and through one another.

In late 2021, ACHAs debut Live Like a Champion campaign reached more than 1.9 million people in Los Angeles through TV, radio, billboards, and social media advertising. In 2023, Phase 2 of the campaign (on Facebook and Instagram), promoted ACHD care at 17 accredited clinics across the country, reaching more than 2 million people. In 2024, the campaign for ACHD care will be promoted at another 7 accredited clinics for Heart Month. This campaign is intended to bring awareness to the BIPOC population who are living with CHD who are often not in care, back into appropriate care.

Financials

Adult Congenital Heart Association Inc
Fiscal year: Jan 01 - Dec 31
Financial documents
2022 ACHA FS - FINAL - 2022 2021 2020 956920-FinancialStatement 2015 2014 2013
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

3.92

Average of 3.94 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

5.4

Average of 5 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

20%

Average of 18% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Adult Congenital Heart Association Inc

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Adult Congenital Heart Association Inc

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Adult Congenital Heart Association Inc

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Adult Congenital Heart Association Inc’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$163,376 -$58,121 -$48,172 $533,814 -$61,766
As % of expenses -6.6% -2.7% -2.8% 32.6% -3.1%
Unrestricted surplus (deficit) after depreciation -$183,722 -$70,342 -$57,108 $525,060 -$71,112
As % of expenses -7.4% -3.3% -3.3% 31.9% -3.5%
Revenue composition info
Total revenue (unrestricted & restricted) $2,105,789 $2,289,993 $1,671,115 $2,125,476 $1,698,174
Total revenue, % change over prior year -16.6% 8.7% -27.0% 27.2% -20.1%
Program services revenue 5.0% 6.9% 6.7% 7.4% 9.0%
Membership dues 0.6% 0.4% 1.2% 1.3% 2.0%
Investment income 0.7% 0.8% 0.8% 0.6% 0.5%
Government grants 0.0% 0.0% 0.0% 23.3% 0.0%
All other grants and contributions 93.7% 92.1% 91.5% 62.7% 91.6%
Other revenue 0.0% -0.2% -0.1% 4.7% -3.1%
Expense composition info
Total expenses before depreciation $2,475,381 $2,143,059 $1,746,718 $1,639,506 $1,998,143
Total expenses, % change over prior year 2.5% -13.4% -18.5% -6.1% 21.9%
Personnel 59.6% 72.3% 76.4% 70.5% 61.9%
Professional fees 12.3% 5.2% 6.0% 10.3% 11.2%
Occupancy 1.6% 1.2% 1.2% 1.1% 2.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 0.0% 9.7% 6.4% 7.6% 3.5%
All other expenses 26.4% 11.6% 9.9% 10.5% 21.4%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $2,495,727 $2,155,280 $1,755,654 $1,648,260 $2,007,489
One month of savings $206,282 $178,588 $145,560 $136,626 $166,512
Debt principal payment $0 $0 $0 $262,300 $0
Fixed asset additions $0 $0 $0 $9,535 $0
Total full costs (estimated) $2,702,009 $2,333,868 $1,901,214 $2,056,721 $2,174,001

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 2.8 4.7 5.4 8.1 5.4
Months of cash and investments 5.7 7.5 7.7 10.8 7.3
Months of estimated liquid unrestricted net assets 2.7 2.7 3.0 7.0 5.3
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $572,273 $839,531 $786,671 $1,108,879 $906,632
Investments $602,318 $497,832 $327,670 $364,860 $307,865
Receivables $30,861 $61,694 $437,390 $215,848 $230,396
Gross land, buildings, equipment (LBE) $105,458 $103,829 $108,628 $118,163 $46,659
Accumulated depreciation (as a % of LBE) 76.6% 82.6% 87.1% 87.5% 68.8%
Liabilities (as a % of assets) 22.8% 19.9% 31.6% 14.8% 20.6%
Unrestricted net assets $571,385 $501,043 $443,935 $968,995 $897,883
Temporarily restricted net assets $417,835 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $417,835 $661,682 $662,830 $544,525 $295,678
Total net assets $989,220 $1,162,725 $1,106,765 $1,513,520 $1,193,561

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

President & CEO

Mark Roeder

Number of employees

Source: IRS Form 990

Adult Congenital Heart Association Inc

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
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Compensation data
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Adult Congenital Heart Association Inc

Highest paid employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of highest paid employee data for this organization

Adult Congenital Heart Association Inc

Board of directors
as of 01/17/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

James Ruppel

Organizational demographics

SOURCE: Self-reported; last updated 12/15/2023

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
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Contractors

Fiscal year ending
There are no fundraisers recorded for this organization.