Allo Hope Foundation

Protecting Babies, Supporting Families

Tuscaloosa, AL   |  www.allohopefoundation.org

Mission

Our mission is to prevent any harm, stillbirth or infant death caused by alloimmunization/HDFN. We are dedicated to providing patient advocacy, support, and education while promoting research and improving healthcare practices for the condition.

Ruling year info

2019

CEO

Bethany Weathersby

Main address

720 Heritage Dr

Tuscaloosa, AL 35406 USA

Show more contact info

EIN

84-2785519

NTEE code info

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (H01)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Alloimmunization is when person develops antibodies against blood cells that are not his/her own. This happens mostly with women during pregnancy. When we say Alloimmunization, we are referring to a woman who has made antibodies against the baby she is carrying. These antibodies cross the placenta and attach to the baby’s red blood cells, destroying them. If a fetus or newborn has lost enough blood cells, it can cause jaundice, anemia, hydrops, heart failure, and even death. Women with alloimmunization need to be closely monitored throughout pregnancy to try and prevent fetal loss. After birth, infants must be monitored for 3 months, sometimes longer in severe cases to prevent brain damage and death. The effects of the disease do not stop there. Women who have been alloimmunized need to take special precautions for the rest of their lives to avoid a hemolytic transfusion reaction; a severe reaction may lead to death.

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?

Patient Registry

The Patient Registry will be a voluntary way that women with alloimmunization can choose to share their health records relating to pregnancy with researchers. The data will be de-identified so that it is anonymous and will be used only for research relating to alloimmunization

Population(s) Served
People with diseases and illnesses

We have developed point of care materials for physicians and patients. These materials will be distributed to every fetal center and MFM fellowship in the USA in 2021. Materials include educational brochures, flip books for prenatal and neonatal care, and posters for exam rooms and offices.

Population(s) Served

We have developed a customized web-based tool to allow alloimmunized women to create their own medical alert cards. Cards are customized with the woman's name, date of birth, specific antibodies, allergies/other conditions, and emergency contacts. Women are able to print their own medical alert cards and save a pdf version to their phone or other device for ICE information. As part of this tool, information about hemolytic transfusion reactions and recommendations from current medical literature are presented to improve patient and provider education regarding the life-long risks due to alloimmunization.

Population(s) Served

Where we work

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.

The Allo Hope Foundation aims to reduce harm, stillbirth and infant death.

We have developed an informative website with current, resourceful material for both patients and providers. This website is increasing awareness about alloimmunization and HDFN, access to current information, and engaging patients and providers about the programs offered.
We are working to develop a patient registry where women can choose to share their health data in order to increase research for the disease.
We are working on providing free, durable medical alert cards to women to reduce the risk of hemolytic transfusion reactions.
We are providing speakers, booth attendants, and literature at medical conferences and other speaking venues to increase awareness of the disease and treatment options.
We are working on developing multilingual literature for distribution. Language should not impede a woman's understanding of her condition.

To do all of these things, we have a medical advisory board and a patient advisory board. The medical advisory board will ensure accuracy of any created literature and published text. They will also help us to stay connected to the medical community and current research. The patient advisory board will keep the organization connected to the women with the disease so that we do not loose sight of their needs and ways we can best support them.

We regularly review and update our website with new content related to alloimmunization and HDFN.
We continually apply for grant funding to improve our programs and reach.
We have a nonprofit coordinator who provides valuable guidance and insight into the set up and running of a nonprofit. Her office also provides event options and sets up speaking engagements.
We have doctors and organizations who have pledged ongoing support.

We have successfully launched our educational website and continue to curate new content. Our website serves as a landing pad for resources for providers and patients regarding clinical trials, calculators, clinical decision support tools, point of care materials, grief resources, and more.
We have developed point of care materials and are in the process of printing and shipping them.
We have made a social media presence and are continuing to grow that with engaging content.
We are currently writing grants for multiple programs.
We are currently in talks with a company for developing a patient registry.

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

    Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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 strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Patient feedback has helped us to develop point of care materials that will accurately reach all demographics of women, not only those with internet access. We are using feedback from our Patient Advisory Board to determine needs in the patient community, new programs, and ways to reach low-income families. We have also used patient feedback to re-design portions of our website and forms to be more user-friendly.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Allo Hope Foundation
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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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  • 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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Allo Hope Foundation

Board of directors
as of 12/4/2020
SOURCE: Self-reported by organization
Board chair

Bethany Weathersby

Josh Weathersby

Bethany Weathersby

Meredith Brock

Jessica Fountain

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? Yes
  • 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 12/04/2020

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 without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data