LILYS LIST

A Home Health Resource

aka Lily's List   |   Tulsa, OK   |  lilyslist.org

Mission

Lily's List works with pediatric patients that have a need for home health nursing. No matter what the need, we work to ensure the hospital-to-home transition is as smooth as possible. Our demographic ranges from birth to 18. Lily's List provides a box of supplies for children who have home health nursing. This box of supplies is called the "Love Box". These supplies are items our board has deemed as essential in the home health lifestyle.

Ruling year info

2018

Co-Founder and Board Chair

Mrs Taylor Cecelia Brook Costello

Co-Founder and Marketing Director

Mr. Joseph Costello

Main address

5347 S Columbia Ave

Tulsa, OK 74105 USA

Show more contact info

EIN

83-1859665

NTEE code info

Nonmonetary Support N.E.C. (E19)

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

Our Story began on February 25th, 2018. Bright and early at 12:15 am our sweet baby girl Lily Reagan entered this world. We knew she would bring us joy, but we didn't know she was going to change our world. On February 27th, 2018 our lives were turned upside down. We learned that our precious daughter had Zellweger Syndrome; a form of Peroxisome Biogenesis Disorder. Lily was blind, severely mentally handicapped, suffered from frequent seizures, and would pass within six months. Although we were expecting the numerous hospital visits, nothing could have prepared our family for the transition from hospital to home. Over the course of a few weeks, we began acquiring supplies that made our life at home much easier; a white board to track of all of Lily's feedings, medications, temperature, seizures, and supplies; a shoe organizer to make easy access and tracking of medical equipment; special drying racks for syringes, etc. After amassing a large amount of helpful tools, we realized that o

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?

Love Box

There are two ways families receive assistance through us: direct contact or through their home health nursing provider. If their provider is already partnered with us, then the provider can contact us to have a box put together for each family. If the patient's nursing provider is not partnered with us, we welcome the family to contact us directly through the Parent Portal.

Population(s) Served
Children and youth
Caregivers

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 children with a source of ongoing care

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

Infants and toddlers

Related Program

Love Box

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

100% of our clients receive ongoing care

Number of children having a medical home

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

Infants and toddlers

Related Program

Love Box

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

100% of our clients have a medical home

Number of new clients within the past 12 months

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

Infants and toddlers

Related Program

Love Box

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

we have received 250 new clients in the past 12 months

Number of children receiving medical services

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

Infants and toddlers

Related Program

Love Box

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

100% of our clients receive medical services

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.

Provide parents with a smooth hospital to home transition. We aim to eliminate the chaos and disorganization that is amounted when coming home with a medically needy child.

Providing boxes of supplies that organize the medical supplies for families with medically fragile children. We do so by being readily available through social media and multiple hospital systems.

Our Capabilities for this are very high. Within the first 2 months of opening, we hit our 5-year goal of 5 boxes a month with the monetary support to make that happen. In 3 years, we have supplied over 300 boxes to families worldwide.

So far, in the 36 months that we have been fully operating, we have helped over 300 families. We have raised over $50,000 and still have a significant amount of funds left to provide boxes for families in need in the coming months.

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.
  • Who are the people you serve with your mission?

    We serve families who have medically fragile children. At the end of each fiscal year, we survey each family that received a Love Box on their satisfaction with our organization.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

  • 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,

  • What significant change resulted from feedback?

    A few of the changes that we have made is how we incorporate our labels for the whiteboards.

  • With whom is the organization sharing feedback?

    Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    It has not changed.

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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 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, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is hard to come up with good questions to ask people,

Financials

LILYS LIST
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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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lock

Connect with nonprofit leaders

Subscribe

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.

LILYS LIST

Board of directors
as of 8/20/2021
SOURCE: Self-reported by organization
Board chair

Taylor Costello

EMILY SNOWDEN

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? Yes
  • 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? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 08/20/2021

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

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 08/20/2021

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.