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
2015
Principal Officer
Greg Harper
Main address
6652 W Brinkley Rd, Suite 110
Kennewick, WA 99338 USA
EIN
47-1326501
NTEE code
Specifically Named Diseases (G80)
Programs and results
What we aim to solve
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
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/events/family-camp-2022/
LFS Hardship Grants
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/
Li-Fraumeni Syndrome Awareness Month and Day
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
Where we work
External reviews
Photos
Our results
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
Increasing
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
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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 will host 150 members of the LFS community.
Living LFS public support and contributions increased 39% from 2019 to 2020.
In March and October 2021, over $36,000 in LFS Hardship Grants were awarded to 52 families with LFS.
As of March 2022, $31,000 in LFS Hardship Grants have been awarded to 31 LFS families in 2022.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Living LFS serves those living with Li-Fraumeni syndrome (LFS), a genetic cancer condition.
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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
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What significant change resulted from feedback?
Every aspect of our 2022 Family Camp was determined based on surveyed feedback from our community. The 2022 camp venue was chosen based on feedback that attendees wanted to be closer to a major airport. Community feedback determined everything from how we navigated COVID both before and during camp, to who they bunked with, to what talks and activities were offered. Thanks to this feedback, our 2022 camp was an overwhelming success.
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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild 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
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Living LFS
Board of directorsas of 11/14/2022
Greg Harper
Greg Harper
Living LFS
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
Lisa Wickens
Living LFS
Robyn Hamilton
Living LFS
Linda Humpert
Living LFS
Organizational demographics
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
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Gender identity
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Sexual orientation
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Disability
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