PLATINUM2023

Living LFS

aka .   |   O'Fallon, IL   |  https://livinglfs.org/

Learn how to support this organization

Mission

At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni syndrome by connecting them with care, resources, and others who are Living LFS.

Ruling year info

2015

President

Andi Last

Main address

637 W. Highway 50, #195

O'Fallon, IL 62269 USA

Show more contact info

EIN

47-1326501

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

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

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Li-Fraumeni syndrome (LFS) is linked to a mutation of TP53, a tumor suppressor gene sometimes called the “Guardian of the Genome.” While TP53, vital in preventing cancer from forming, is the most frequently mutated gene in human cancer, Li-Fraumeni Syndrome (LFS) is both devastating in its impact and isolating in its rarity. Most doctors are unfamiliar with Li-Fraumeni syndrome, and many LFS families have never met any others who have LFS.

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?

Living LFS Jennifer Mallory Family Camp

Family Camp, established in 2019, provides psychosocial support, learning opportunities, fun, and a sense of community for families who have members with Li-Fraumeni syndrome. At camp, LFS families engage with genetic counselors, researchers, dietitians, and psychologists from the Li-Fraumeni syndrome medical community to address topics such as maintaining mental health, advocating for themselves with their medical team, communicating with others about LFS, and supporting caregivers, as well as the research behind LFS genetics, the latest studies, health and nutrition, and more. Families get the chance to meet and bond with other families who understand life with Li-Fraumeni syndrome while they enjoy fun activities like zip lining, swimming, fishing, disc golf, arts and crafts, and participating in a talent show. Learn more: https://livinglfs.org/our-work/jennifer-mallory-family-camp/

Population(s) Served
People with diseases and illnesses

In honor of Living LFS founder Jennifer Mallory (March 20, 1976 - Oct 5, 2020), every March 20th and October 5th Living LFS makes direct payments to eligible LFS families to help defray the steep costs of cancer screening and treatment, specialized equipment, travel to cancer centers, and lost wages resulting from the continuous "cancering" that plagues families with a hereditary cancer syndrome. To be eligible for an LFS hardship grant, applicants, their child(ren), or their partner must have Li-Fraumeni syndrome (LFS), or they must be a caregiver for someone with LFS. Applicants must be able to demonstrate an LFS-related financial need in order to qualify for an LFS Hardship Grant. Since the program was established in 2021, over $77,000 in Hardship Grants have been provided by Living LFS and its partners to 93 LFS families in need. Learn more: https://livinglfs.org/lfs-hardship-grants/

Population(s) Served

In 2021, Living LFS designated March as Li-Fraumeni Syndrome Awareness Month, and March 20th as Li-Fraumeni Syndrome Awareness Day. This LFS awareness campaign educates the general public about hereditary cancer and the importance of research into Li-Fraumeni syndrome and TP53 as keys that could unlock cures to many cancers. Learn more: http://LFSawareness.com

Population(s) Served
People with diseases and illnesses

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.

Total dollar amount of grants awarded

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

People with diseases and illnesses

Related Program

LFS Hardship Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The LFS Hardship Grant program began in 2021.

Total number of grants awarded

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

People with diseases and illnesses

Related Program

LFS Hardship Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The LFS Hardship Grant program began in 2021.

Number of dollars received from donors

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

People with diseases and illnesses

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of free participants on field trips

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

People with diseases and illnesses

Related Program

Living LFS Jennifer Mallory Family Camp

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The inaugural Living LFS Jennifer Mallory Camp was in October, 2019. COVID-19 necessitated the suspension of Family Camp until August 2022.

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.

At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS. Our vision is to provide emotional support and resources to make living LFS easier.

Through the Li-Fraumeni Syndrome Support Groups and Living LFS Jennifer Mallory Family Camps, Living LFS gives families with LFS the tools they need to advocate for themselves with their medical teams, to cope with the emotional turmoil of LFS life, and to learn from the experiences of others in the LFS community.

Through LFS Hardship Grants, Living LFS helps LFS families afford the specialized cancer care they need.

During Li-Fraumeni Syndrome Awareness Month and LFS Awareness Day, Living LFS educates the public about genetic cancer and conveys the importance of research into Li-Fraumeni syndrome and TP53 as keys that could unlock cures to many cancers.

Living LFS' all-volunteer Board of Directors is made up of people with Li-Fraumeni syndrome (LFS), LFS family members, and genetic and psychology professionals who specialize in LFS. All passionate advocates for the Li-Fraumeni syndrome patient community, the Living LFS board brings their extensive skills, talents and experience together to ensure the organization's goals, as set by Living LFS' founders, are met. The 10 member Board of Directors organize Family Camps, meet ups, and volunteers, inform the LFS community through website, email, and social media, raise funds and write grants for projects, and most importantly, provide support community for those with Li-Fraumeni syndrome.

In 2019, Living LFS hosted 75 members of the Li-Fraumeni syndrome community at the Living LFS Family Camp. In August 2022, The Living LFS Jennifer Mallory Family Camp hosted 108 members of the LFS community.

In 2021, over $36,000 in LFS Hardship Grants were awarded to 52 families with LFS.

In 2022, $41,000 in LFS Hardship Grants were awarded to 41 LFS families.

In 2023, $47,000 in LFS Hardship Grants were awarded to 47 LFS families.

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 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 collect feedback from the people we serve at least annually, 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 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?

    Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

Living LFS
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

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.

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.

Living LFS

Board of directors
as of 10/30/2023
SOURCE: Self-reported by organization
Board chair

Andi Last

Andi Last

Living LFS

Trishia Shelly-Stephens

Living LFS

Inge Vandormael

Living LFS

Jennifer Mills

Living LFS

Jaclyn Schienda

Dana-Farber Cancer Institute

Catherine Wilsnack

Living LFS

Linda Humpert

Living LFS

DeAnn Fenton Mooney

Living LFS

Tom Connolly

Living LFS

Greg Harper

Living LFS

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? Not applicable
  • 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

SOURCE: Self-reported; last updated 10/17/2023

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
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data