PLATINUM2023

Aortic Hope, Inc.

Connecting Hearts...One Beat At A Time

aka Aortic Hope   |   Bel Air, MD   |  www.aortichope.org

Mission

Aortic Hope is a community of Aortic Disease patients, survivors, and caregivers. We Spread Hope, Create Awareness and Provide Support to patients, survivors, and caregivers during the recovery and management of aortic disease.

Ruling year info

2018

Principal Officer

Carin Andersen

Co Principal Officer

Terri Cook

Main address

P.O. Box 17

Bel Air, MD 21009 USA

Show more contact info

EIN

82-2084008

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

Communication

Blog

Programs and results

What we aim to solve

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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?

Hope Mail

Small care packages are sent on anniversaries of aortic significance. These packages include a personal note from Aortic Hope and a small gift to remind people they are not alone in their aortic journey and that there is hope and support.

Population(s) Served
Adults

Supporters around the US volunteer as Hope Ambassadors. They are a support person in their local area, providing one on one support to other survivors/caregivers and acting as a contact for doctors offices, providing them with information to pass to patients in need of support.

Population(s) Served
People with diseases and illnesses
Adults

We host virtual support meetings for targeted groups within the aortic community. Support groups are established for general support, grief, aortic disease survivors, and caregivers. They are conducted via Microsoft Teams.

Population(s) Served
People with diseases and illnesses
Adults

Via the YouTube channel, we offer monthly Q&A interviews with a variety of licensed physician and other medical professionals as well as attorneys etc. Topics are chosen to educate the community on research in aortic disease, the management of aortic issues, surgical and recovery options, and lifestyle improvements for those living with aortic disease.

We provide a Week in Review to educate the community on a variety of topics that we share through other social media platforms. Our Survivor Series is presented on AHTV and shared throughout the world.

Population(s) Served

You never know what impact you will have when sharing your story of survival or the story of adversity. We encourage individuals (patients, caregivers and loved ones of those who have passed) to share their stories related to aortic disease. Information about the symptoms, diagnosis, treatment and recovery not only validate others in the community but also help to educate medical professionals and first responders about aortic disease which is more common than you think.

Stories can be share in written form, through a pre-recorded video or by going live via AHTV our YouTube channel.

Population(s) Served

Tableside Patient Information Cards is a way to educate the public about Aortic Hope. Physicians can provide these handouts to patients and their caregivers during the office visit or leave them in the waiting area. Information provided includes QR codes to access our support group meetings.

Population(s) Served
People with diseases and illnesses
Adults
Caregivers
Families
People with diseases and illnesses
Adults
Caregivers
Families
People with diseases and illnesses
Adults
Caregivers
Families

Where we work

Awards

Daily Award #7303 2022

Points of Light

Videos

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 people using the Internet to keep track of personal health information

This metric is no longer tracked.
Totals By Year
Related Program

Support Groups

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Numbers in yby results are limited to Facebook members and include patients and caregivers. Total social media reach: As of FY 2022: Total Social Media Reach: >90,000

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.

Aortic Hope provides programs developed to support and educate the community at large. Some programs include social media outreach and interaction, survivor support groups, caregiver support groups, live educational events on Facebook and YouTube, and care packages.
Our goals are based on the themes of support, education, and awareness. W strive to reach aortic disease patients, survivors, and caregivers on an ongoing basis.
In 2023, we are embarking on a new initiative, Aortic Dissection: The Patient Guide. Aortic Dissection: The Patient Guide and relevant podcasts are designed to:
• Communicate a medically based understanding about aortic dissection to patients and caregivers.
• Empower patients with knowledge about their recovery.
• Raise awareness of the symptoms and severity of aortic disease within families so that it is no longer a silent killer.
• Educate patients and family members about genetic factors associated with aortic disease.
• Reduce the toll of aortic disease by addressing barriers to diagnosis, treatment, and follow-up care.
• Provide a voice for aortic disease patients to improve access to appropriate diagnosis and treatment, and recovery improving quality of life and overall outcomes.

Aortic Hope provides programs developed to support and educate the community at large. Some programs include social media outreach and interaction, survivor support groups, caregiver support groups, live educational events on Facebook and YouTube, and care packages.

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 shared information about our current feedback practices.

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

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, 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, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to get honest feedback from the people we serve, It is difficult to identify actionable feedback

Financials

Aortic Hope, 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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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.

Aortic Hope, Inc.

Board of directors
as of 04/19/2023
SOURCE: Self-reported by organization
Board chair

Carin Andersen

Aortic Hope

Term: 2016 -

William Barnhart

Director of Community Relations & Marfan Liaison

Deb Joly-Warcholik

Director of Volunteer Services

Carin Andersen

President

Tammy Warner

Secretary/Director of Community Relations

Terri Cook

Director of Fundraising

Maryanne Leister

Treasurer

Jeni Shaffer

Director of Admin Services

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 4/17/2023
info Candid has made improvements to the race and ethnicity options.

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
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person with a disability

The organization's co-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

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/06/2023

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 have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.