PLATINUM2023

Cutaneous Lymphoma Foundation

Warren, MI   |  http://clfoundation.org

Mission

Vision: A life free of cutaneous lymphoma Mission: Eliminate the burden of cutaneous lymphoma by; • Promoting awareness • Providing education • Advancing patient care • Fostering research

Ruling year info

1999

Chief Executive Officer

Ms. Susan Thornton

Main address

PO Box 969

Warren, MI 48090 USA

Show more contact info

Formerly known as

Mycosis Fungoides Foundation

EIN

38-3443135

NTEE code info

Cancer (G30)

Cancer Research (H30)

Counseling Support Groups (F60)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Patients Challenges: Lack of timely diagnosis Lack of information about CL, its treatments and self management strategies Lack of information on where to access optimal treatment and care Secure a referral to expert CL care Secure access to optimal CL treatment and care Lack of understanding of how the health system works Lack of voice in decisions that impact on their lives Cutaneous Lymphoma Community Challenges: Lack of connection with and ability to support each other Inability to connect with other stakeholders (e.g. clinicians, centers etc.) Inability to align on the united patient perspective that can be communicated to health policy makers and researchers Lack of understanding of the scientific and drug development/ regulation processes Lack of understanding how the healthcare system works

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?

Patient Educational Events

Through both in person and online we offer over 20 educational events annually; hour long virtual as well as evening, one day and two day in person programs for people affected by cutaneous lymphomas

Population(s) Served
Adults

The Foundation has a robust online learning center located within our website. This includes vetted electronic educational publications, videos and articles, along with stories of help and hope, treatment center and clinical trial listings.

Population(s) Served
People with diseases and illnesses
Families

Through our Research Awards Program the Foundation supports research and researchers in the area of cutaneous lymphoma

Population(s) Served
Adults

We offer a wide verity of educational and inspirational publications available for distribution in hard copy. Newsletters, Patient's Guide to Cutaneous Lymphoma, an assortment of disease specific Fast Facts brochures, Supplements to the Guide, and others.

Population(s) Served
People with diseases and illnesses
Families

We provide the patient's voice and perspective across a wide variety of global alliances, governments, regulatory, as well as collaborative efforts.

Population(s) Served

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 clients served

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Educational materials, resources and support services accessed over 120,000 times in 2022

Net promoter score

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Survey responses indicate that 100% of people who access our programs and services would recommended the information or support they receive to someone else.

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.

Individuals:
Empower People with Cutaneous Lymphomas (PwCL) and their care partners by educating them about CL, its treatment and care management strategies
Gather and identify relevant information on CL, translate this into an easy-to-understand language and accessible formats and disseminate to PwCL and their care partners
Connect PwCL and their care partners to others sharing a similar disease experience
Provide a safe place for PwCL to share experiences and emotions associated with living with a life-threatening condition
Provide practical support to PwCL and their care partners
Help PwCL and their care partners navigate the healthcare system and find the treatment and care they need


Community:
Map and engage effectively stakeholders with the greatest impact on the lives of PwCL
Conduct regular horizon scanning to identify emerging issues that could have an impact on the lives of PwCL
Raise awareness about CL among relevant stakeholders to promote early diagnosis
Represent the voice of people affected by CL to different stakeholders and advocate for their rights
Connect to and build alliances with like-minded organizations at a national and global level to advance the interests of PwCL
Bring interested stakeholders together to discuss and find workable solutions to the biggest problems faced by people with CL
Generate data about the burdens of living with CL
Promote research on topics that matter most to PwCL

Education and Support Services:
Ensure that everyone with cutaneous lymphomas (CL) and their care partners are empowered to be involved in their care and live well with their condition

Advocacy
Have a strong influence over health service, regulatory and policy decisions that impact on the lives of people with CL

Research
Advance research that is focused on tackling the most important unmet needs of people with CL

Governance
Ensure an effective governance structure and excellence in operations in order to deliver on our vision and mission

The organization has been built on a solid foundation. With the dedication and passion of the strong Board of Directors, Staff and an entire patient community behind these efforts, we have developed a solid infrastructure to support this growth. Our extensive planning along with a sustainable funding plan we believe these strategies are achievable as we've outlined.

It is with great pride that we have been on a steady growth since our inception 25 years ago. We started with a focus in providing education and support, grew into advocacy efforts and then research. With each passing strategic plan we continue to add depth to each of these areas an broaden our reach globally.

We now support people with cutaneous lymphoma globally in over 170 countries, providing educational information and resources to over 100K individuals annually. We have been able to fund over 500K in scientific research specific to cutaneous lymphomas and support over 50 researchers focusing in this rare disease. We continue expand our reach and are dedicated to spreading information and the patient experience to help improve the lives of people living with this rare disease.

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, 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?

    We don't have any major challenges to collecting feedback

Financials

Cutaneous Lymphoma Foundation
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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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  • 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.

Cutaneous Lymphoma Foundation

Board of directors
as of 10/27/2023
SOURCE: Self-reported by organization
Board co-chair

Ms. Luarel Carlson

No Affiliation


Board co-chair

Mr David Elefant

Michael Young

Susan Thornton

Laurel Carlson

Marianne Tawa

Jeff Ward

Steven Horwitz

Youn Kim

David Elefant

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 ? Yes
  • 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? Yes