Health—General & Rehabilitative

Lucas John Foundation Inc

Bringing light to families during their darkest days in NICU

Mission

Lucas John Foundation is a nonprofit organization. Lucas John Culp was born March 6, 2018 and medically diagnosed with a very rare genetic condition, Non-ketotic hyperglycinemia (NKH). Our focus as a foundation is to help fund research, and help families find viable medical solutions with conventional and alternative therapies while providing financial and emotional support. We raise funds for rare disease research. We raise funds for gene replacement therapy. We offer scholarships and care kits for NICU families. We offer financial support to families with children diagnosed with rare diseases.

Ruling Year

2019

President

Shawna Rae Culp

Main Address

645 S Esquire Way

Mesa, AZ 85202 USA

Keywords

NICU, rare disease, family, support, treatment, hospital, postpartum care, testing,

EIN

83-3683882

 Number

7697612392

Cause Area (NTEE Code)

Fund Raising and/or Fund Distribution (E12)

Fund Raising and/or Fund Distribution (G12)

Fund Raising and/or Fund Distribution (H12)

IRS Filing Requirement

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

Programs + Results

What we aim to solve

This is a new non-profit. It is our heart and mission to help families suffering from their babies in the NICU.

Our programs

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

SOURCE: Self-reported by organization

Grab n Go Snack Bags for NICU

Providing Support for NICU families and Children with RARE Diagnoses

Research for rare disease and gene therapy.

Where we work

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

As a non-profit, we rely on donations to fund and offer support to improve the quality of life for families in the NICU and children with RARE diseases Our Mission is to acknowledge and provide support for families encountering unimaginable medical issues. When faced with challenges we look for perfect solutions that eliminate problems through access to treatments, technology, and social support. Lucas John Foundation is a nonprofit organization established in 2019, focusing on helping families regroup and find viable medical and natural solutions for their premature infants, and any diagnosed illness or disease. Our mission is to develop this foundation into a nationwide resource connected to every children’s hospital. We hope to provide the focus items below and continue to add new support systems for families over time. Lunch sacks for parents to grab-n-go during a NICU stay Postpartum care kits for moms during a NICU stay Easy slip-on robes for mother’s skin-to-skin Massage, hair cuts, and other personal care Financial assistance to lighten the burden of missed work A restore room built to help families relax and rejuvenate Establish valet parking for NICU parents Better chairs and sleeping arrangements at the bedside

Fundraising, budgeting, project assignments. We are starting with fundraising. Once we have that started we will begin to break out each of our top goals. We have set a budget for each to begin this year. Grab bags for NICU, Care Kits, and Robes Our volunteer teams will each be assigned to work on these so they only have one focus. Assigning three people per project to start.

We meet weekly on Zoom and in-person once a month. We each bring our research on cost analysis and what will be needed to begin each individual goal. Our teams are excited and focused only on their part of the mission. Designating these assignments allows them to go all in and not be distracted by the other goals for the foundation as a whole.

We set weekly, monthly and yearly goals. Our secretary will issue reports on where we are in our efforts each week during our meeting. We will provide feedback slips with our gifts to gain opinions and response of needs at the NICU. This will allow the parents to tell us what they need and if something more can be done to improve our gifts to them.

We have developed the website. We have gathered our teams and board members. We have established priority projects and cost projections. We started the 501c3 and opened the bank account. Hired an accountant to run the financial reports. Hired a law firm to manage the forms and schedules required to maintain our status. Developed a social media following.

How We Listen

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

Source: Self-reported by organization

the feedback loop
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: suggestion box/email, social media.
How is the organization using feedback?
We use feedback to: 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.
With whom is the organization sharing feedback?
We share feedback with: our board.
What challenges does the organization face when collecting feedback?
It is difficult to: we don't have any major challenges to collecting feedback.
What significant change resulted from feedback
Creating a social presence that gives relevant data on a consistent basis to raise awareness.

External Reviews

Financials

Lucas John Foundation Inc

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Operations

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

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Yes

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & 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?

Not Applicable

Organizational Demographics

Who works and leads organizations that serve our diverse communities? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

SOURCE: Self-reported; last updated 09/09/2019

Leadership

The organization's leader identifies as:

Race & Ethnicity
White/Caucasian/European
Gender Identity
Female
Sexual Orientation
Decline to state
Disability Status
Decline to state

Race & Ethnicity

Gender Identity

Sexual Orientation

No data

Disability

No data

Equity Strategies

Last updated: 09/09/2019

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data

done
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

done
We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
done
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.