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Lonon Foundation

Supporting children impacted by a caregiver or parent's cancer diagnosis

Charleston, SC   |  www.thelononfoundation.org

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GuideStar Charity Check

Lonon Foundation

EIN: 81-5428998


Mission

Our mission is to help children impacted by a parent or caregiver's cancer diagnosis find comfort, heal, and grow from their shared experiences.

Ruling year info

2017

Principal Officer

Anna Lonon

Main address

P.O. Box 29413

Charleston, SC 29413 USA

Show more contact info

EIN

81-5428998

Subject area info

Mental health care

Cancers

Family counseling

Youth organizing

Population served info

Children and youth

People with diseases and illnesses

NTEE code info

Youth Development Programs (O50)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Show Forms 990

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Resources are needed for children who have a parent or caregiver with cancer. Currently, there are no such resources in our state to help these children. Our organization aims to create such resources.

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?

UPLIFT

UPLIFT (Using Play, Love, Inspiration, and Friendship as Therapy) PROGRAM offers in-person and virtual events for children and adolescents ages 5 to 17 who are impacted by a parent’s or caregiver’s cancer diagnosis. UPLIFT is developed, implemented, and evaluated in collaboration with the College of Charleston’s Child Life program, facilitated by a dedicated and professionally-trained staff of Certified Child Life Specialists, and utilizes play theory, trauma-informed care, and mindfulness to help children connect with each other, heal, and grow through the stages of diagnosis, treatment, remission, or cancer-related death. UPLIFT encourages participation from parents and families and offers self-expression activities rooted in play, community building, and stress reduction through a family-centered care framework.

Population(s) Served

WELCOME BOXES are curated by a Certified Child LIfe Specialist, age-appropriate packages that provide mindfulness-based resources and activities to help children cope. Every child who enrolls in UPLIFT receives a WELCOME BOX.

Population(s) Served

CHILD LIFE SPECIALIST SUPPORT includes one-on-one check-ins, connections to local resources, and age-appropriate activity plans. Upon enrollment into UPLIFT, the CLS assesses the family, identifies their specific needs, provides psycho-education directly, and connects them to additional community resources. The CLS is able to support the family through any part of their cancer journey, serving as a critical component of their continued cancer care and providing psychosocial support that enforces coping and resilience. After the initial intake call, the CCLS creates an personalized mindfulness-based kit that is sent to families to introduce them to our program, provide curated, psycho-educational materials like books on grief/cancer diagnosis/etc; and additional play-based items to help with normative play that also supports coping and resilience. This resource can be provided to families with children from age 0-17 and children over 17 who have a developmental age of 5-17 years.

Population(s) Served

FAMILY RESOURCE KITS have been available at hospitals and cancer clinics in the Tri-County area since 2022. Created with family-centered care principles by our on-staff Certified Child Life Specialists, these kits incorporate a variety of materials to promote a child’s or teen’s ability to cope when a parent or caregiver is diagnosed with cancer. The kit includes a psychoeducational guide for parents on how to use age-appropriate language when talking about cancer to children and teens, and normative play items (e.g. journals, magic wands, etc) to assist children in developing effective coping skills. We have distributed more than 250 FRKs to 51 different locations since Jan. 2023.

Population(s) Served

MINI-GRANTS provide financial support to families for utility bills, school supplies, medication and medical supplies, and other basic needs such as clothing or to supplement housing costs. These grants can also be used to help pay for therapy and grief counseling. Since 2020, we have provided approximately $21,000 to families.

Population(s) Served
Children and youth
People with diseases and illnesses
Caregivers
Families
Widows and widowers
Children and youth
People with diseases and illnesses
Caregivers
Families
Widows and widowers
Children and youth
People with diseases and illnesses
Caregivers
Families
Widows and widowers
Children and youth
People with diseases and illnesses
Caregivers
Families
Widows and widowers
Children and youth
People with diseases and illnesses
Caregivers
Families
Widows and widowers

Where we work

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.

Our goal is to create multiple resources to fill the gap in programs for children who have a parent or caregiver with cancer. We hope to serve at least 100 children in the Lowcountry area in our monthly program. We also hope to raise at least $50,000 a year to fund the monthly program, as well as fund a weekly Summer camp for these children. Finally, we hope to raise an additional $25,000 to help fund a Child Life Specialist position at The Medical University of South Carolina to help children who have a parent or caregiver with cancer.

We will hold at least one major fundraiser a year, The Hike for Mike, in the Fall. This fundraiser, along with multiple fundraisers spearheaded by volunteers with The Lonon Foundation at the College of Charleston (including CycleBar, Our Spare Change Sip & Shop, canning, etc), will also raise funds for our goals. We also receive donations via our website, social media pages, as well as board of director yearly contributions and various online giving campaigns like #GivingTuesday. To reach families that need our resources, we work with area hospitals, PTAs, schools, social workers, hospices, etc.

Our capabilities include our website, social media pages, and our various partnerships. One of our existing partnerships includes the College of Charleston. Our UPLIFT program is run entirely by student volunteers. These volunteers are darkness to light trained, have received background checks, in addition to receiving thorough training by child life specialists from our second partnership with The Master of Science in Child Life Program (MSCL) at The Graduate School of the College of Charleston. Our third partnership includes MUSC, the Medical University of South Carolina. We work with both Child Life Specialists and Social Workers at MUSC. This collaboration incorporates highly trained professionals from a myriad of hospital departments.

In the past few months we have been able to accomplish a multitude of goals. We have been able to create a self-sufficient, sustainable UPLIFT program run entirely by College of Charleston student volunteers. Our UPLIFT program has reached more than 15 families, providing a safe and healthy environment for these children. These children, ages 6-17, have been able to create invaluable relationships with our College of Charleston students, relationships that simply cannot be described but rather felt. In addition, our College of Charleston student volunteers have expressed their profound joy and gratitude for the existence of this very program. Furthermore, we have been able to raise awareness to an under-served population, that is often disregarded. We hope to expand our mission to encompass a permanent Child Life Specialist position at MUSC dedicated to provide play therapy to these children dealing with a parent or caregiver's cancer diagnosis. In addition, we aim to create a camp that will serve as a week-long program for our UPLIFT children to attend free of charge. This camp will truly solidify the friendships and bonds these children have formed with one another through their shared experiences.

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 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

  • 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 look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), 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 share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, 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

Financials

Lonon Foundation
Fiscal year: Jan 01 - Dec 31

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.

Financial data

SOURCE: IRS Form 990

Lonon Foundation

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Lonon Foundation

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

Operations

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

Documents
Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Principal Officer

Anna Lonon

As founder of The Lonon Foundation, Anna is driven by her own experience to help children in the Lowcountry who have a parent or caregiver with cancer. Anna currently serves as a Communications Specialist at an open source software company. She earned her Masters in English from the College of Charleston and The Citadel. She earned her BA at The University of South Carolina, where she met Michael Lonon. She spent 14 years teaching writing and rhetoric at the college level. ​ Formally, Anna served as the Assistant Director of Strategic Development and Communication for the Head and Neck Cancer Alliance.

Lonon Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Lonon Foundation

Board of directors
as of 07/02/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Sam Myers

Edward Jones

Term: 2024 - 2027

Allison Hardy

Physician Alignment at Cerner

Chloe McAuley

Grace Episcopal School

McKenzie Wofford

Greer Memorial Hospital

Jennifer Page

Ralph H. Johnson VA Medical Center

Allison Crawford

EmmaMarie Broome

HabitNu

Dr. Ajay Sood

CHS Psychiatric Associates LLC

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 ? No
  • 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 7/2/2024

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
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 07/02/2024

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • 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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • 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 seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • 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.