Cutaneous Lymphoma Foundation
Cutaneous Lymphoma Foundation
EIN: 38-3443135
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
1999
Chief Executive Officer
Ms. Susan Thornton
Main address
PO Box 969
Warren, MI 48090 USA
Formerly known as
Mycosis Fungoides Foundation
EIN
38-3443135
Skin conditions
Cancers
Mental health counseling
Population served
Adults
People with diseases and illnesses
Families
NTEE code
Cancer (G30)
Cancer Research (H30)
Counseling Support Groups (F60)
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
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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
Online Learning Center
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.
Research
Through our Research Awards Program the Foundation supports research and researchers in the area of cutaneous lymphoma
Publications and Educational Materials
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.
Patient Advocacy and Awareness
We provide the patient's voice and perspective across a wide variety of global alliances, governments, regulatory, as well as collaborative efforts.
Where we work
Videos
Our results
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
Reports and documents
Download strategic planLearn 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?
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
What are the organization's key strategies for making this happen?
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
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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 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
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2023 info
12.18
Months of cash in 2023 info
15.3
Fringe rate in 2023 info
9%
Funding sources info
Assets & liabilities info
Financial data
Cutaneous Lymphoma Foundation
Balance sheetFiscal Year: Jul 01 - Jun 30
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: Jul 01 - Jun 30
This snapshot of Cutaneous Lymphoma Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
Created in partnership with
Business model indicators
| Profitability info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $130,568 | $33,241 | $350,769 | $173,256 | -$32,425 |
| As % of expenses | 15.9% | 3.9% | 49.7% | 24.1% | -3.5% |
| Unrestricted surplus (deficit) after depreciation | $109,398 | $12,072 | $336,642 | $159,293 | -$58,169 |
| As % of expenses | 13.0% | 1.4% | 46.8% | 21.8% | -6.1% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $1,071,973 | $1,009,257 | $1,100,210 | $943,674 | $575,949 |
| Total revenue, % change over prior year | 20.4% | -5.9% | 9.0% | -14.2% | -39.0% |
| Program services revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.4% | 0.2% | 0.1% | 0.0% | 2.2% |
| Government grants | 0.0% | 0.0% | 7.3% | 0.0% | 0.0% |
| All other grants and contributions | 99.6% | 99.8% | 92.6% | 100.0% | 97.8% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $819,607 | $858,558 | $705,091 | $718,038 | $932,290 |
| Total expenses, % change over prior year | 15.1% | 4.8% | -17.9% | 1.8% | 29.8% |
| Personnel | 52.5% | 52.5% | 61.3% | 58.9% | 50.0% |
| Professional fees | 9.4% | 7.1% | 8.5% | 7.4% | 6.2% |
| Occupancy | 2.0% | 2.3% | 2.6% | 2.9% | 2.2% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 0.7% | 17.8% | 7.1% | 13.9% | 9.7% |
| All other expenses | 35.4% | 20.2% | 20.5% | 16.9% | 31.9% |
| Full cost components (estimated) info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $840,777 | $879,727 | $719,218 | $732,001 | $958,034 |
| One month of savings | $68,301 | $71,547 | $58,758 | $59,837 | $77,691 |
| Debt principal payment | $0 | $0 | $80,400 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $26,499 | $46,172 | $0 |
| Total full costs (estimated) | $909,078 | $951,274 | $884,875 | $838,010 | $1,035,725 |
Capital structure indicators
| Liquidity info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Months of cash | 13.4 | 16.5 | 25.4 | 26.0 | 15.3 |
| Months of cash and investments | 13.4 | 16.5 | 25.4 | 26.0 | 15.3 |
| Months of estimated liquid unrestricted net assets | 5.1 | 5.3 | 12.0 | 13.9 | 10.1 |
| Balance sheet composition info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Cash | $915,500 | $1,177,146 | $1,492,588 | $1,558,660 | $1,188,790 |
| Investments | $0 | $0 | $0 | $0 | $0 |
| Receivables | $110,274 | $5,000 | $0 | $65,000 | $103,000 |
| Gross land, buildings, equipment (LBE) | $67,375 | $67,375 | $90,009 | $136,181 | $147,086 |
| Accumulated depreciation (as a % of LBE) | 60.7% | 92.1% | 80.4% | 63.4% | 76.2% |
| Liabilities (as a % of assets) | 8.4% | 9.8% | 2.6% | 0.2% | 6.9% |
| Unrestricted net assets | $371,718 | $383,790 | $720,432 | $879,725 | $821,556 |
| Temporarily restricted net assets | $596,747 | N/A | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | N/A | N/A | N/A | N/A |
| Total restricted net assets | $596,747 | $714,205 | $758,555 | $810,935 | $487,019 |
| Total net assets | $968,465 | $1,097,995 | $1,478,987 | $1,690,660 | $1,308,575 |
Key data checks
| Key data checks info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
Chief Executive Officer
Ms. Susan Thornton
Number of employees
Source: IRS Form 990
Cutaneous Lymphoma Foundation
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
Cutaneous Lymphoma Foundation
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Cutaneous Lymphoma Foundation
Board of directorsas of 10/27/2023
Board of directors data
Ms. Luarel Carlson
No Affiliation
Mr David Elefant
Michael Young
Susan Thornton
Laurel Carlson
Marianne Tawa
Jeff Ward
Steven Horwitz
Youn Kim
David Elefant
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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- Letter of Determination
- Officer and/or Employee data for 2023, 2022, 2021, 2020, 2019
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