SILVER2023

CML Buster Foundation

Guiding CML Patients and Targeting CML Cures

Costa Mesa, CA   |  www.cmlbf.org

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Mission

CML Buster Foundation: fierce patient advocates fighting for CML cancer research funding toward a cure and support of 120,000+ US CML patients and their families fighting for a better quality of life while living with CML. CMLBf.org Mission: To empower CML patients and their families to improve their quality of life and to fund CML Cures. CMLBf.org Vision: A world in which CML patients live full abundant lives with dignity and hope for a cure. CMLBf.org Purpose: To define, fund, create and maintain the tools of empowerment essential for the well-being of the US CML community.

Ruling year info

2020

Founder/ COB/ VP Mission /CML Warrior 22 years

Mrs. Joan W. Clements

Founder/ Treasurer/ CFO/ CML Caregiver 22 years

Mr. Gerald R Clements

Main address

292 Palmer Street Apt C-1

Costa Mesa, CA 92627 USA

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EIN

83-4526836

NTEE code info

Cancer (G30)

Voluntarism Promotion (T40)

Fund Raising and/or Fund Distribution (W12)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

As of 2023, there are over 120,000+ patients living with CML in the United States and 480,000 family (non-professional) caregivers supporting them (~4 for every patient). The makeup of that population in 2023: Newly Dx CML patients, about 7-8 thousand each year 1) ~87% live a normal lifespan on successful U.S. oral therapy. 2) About 20% stop or change therapies. 3) About 5% have transplant or fatal disease progression. The average age at Dx is 64. Over 50% of those Dx with CML are over the age of 60. It is estimated that the U.S has about 4-5% of the world CML population. It is estimated that 50% of the U.S. CML population is underserved and at higher risk of treatment failure because: US CML patients by geography live more than 50 miles from: 1) A major cancer center, 2) A BCR/ABL1 qPCR-IS testing facility 3) An experienced* CML Hematologist-Oncologist (a CML specialist)

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?

CML Busters' US Family Support Groups

Since 2003 CML Busters Family Support Groups have helped hundreds of CML families deal with their daily cancer challenges, emotional roller coaster rides, treatment aberrations, side-effects from TKIs and the financial devastation from the high cost of these wonder drugs.

Based on this experience and our new non-profit status, we are continually expanding our Family Support Groups and are hosting virtual support groups across the US.

When Covid-19 isolation ends, we intend to reopen our face-to-face meetings in major cities. We are always looking for volunteer Patient Leaders and Qualified Facilitators for our groups.

Population(s) Served
Families
Caregivers

A web and social media presence are essential to provide well-curated and current information on CML which changes rapidly for the 120,000+ US CML patients in treatment and their 480,000+ caregivers. CML Buster Foundation is undertaking to host a web portal aimed at providing a single source for everything CML and to maintain the curation of those data links for the benefit of US CML families struggling daily with the disease, its treatments, their side-effects, and the testing required to live with this disease daily. Initial release to be completed by 05/15/2021. Ongoing support will be needed to sustain this important component of our mission/vision and purpose.

Population(s) Served
Families
Caregivers

For over 20 years this rare disease, Chronic Myeloid Leukemia (CML) has been transformed from fatal cancer into a "well-controlled" cancer. In 2001 patients like our founder began using Tyrosine Kinase Inhibitors (TKIs), the very first targeted oral cancer medication, which has revolutionized cancer many treatments. Most CML patients today show no visible signs that they have cancer (but they DO deal with treatment side-effects daily), some appear to live normal lives (but there is still NO CURE for CML). Patient warriors simply wait each Day, Week, and Month hoping their treatments will not fail. A cloud of uncertainty with each test, the question will my cancer return? The families suffer under the extraordinary expense of treatments over $160,000/year/patient in the US. This disease affects the whole family emotionally, physically, and financially.

Since 2003, the CML Busters Family Support Groups have helped hundreds of CML families deal with their daily cancer challenges, emotional roller coaster rides, treatment aberrations, side-effects from TKIs, and the financial devastation from the high cost of these wonder drugs.

Over 6.5 Billion dollars per year in the US and 26 Billion dollars per year globally is spent each year on TKI oral cancer drugs just for this small [population. These drugs for 96% of patients "control and maintain" CML in a chronic status. 20 years of scientific data on treatment success has given us a greater understanding of the management and progression of this cancer. Now we are very close to real cures for CML because of the longevity brought about by TKIs.

CML Buster Foundation has taken up the gauntlet to focus funding towards the "Last Mile Towards CML Cures", we are "Going for the CML Stem Cell". We will be funding transitional researchers in the area of CML cures and hope to eradicate this disease and the toll it takes on CML families and our medical support systems around the globe.

This solution will not be a quick one as funding for this very rare disease has evaporated and been replaced by other rare cancers and Covid-19 research in recent years.

We hope you will join our fight to find real CURES and free up a portion of that 26 Billion dollars each year to help us lead the fight for the cure of all cancers.
CML was first cancer to be controlled by oral cancer drugs, let's make it the first blood cancer to claim a CURE.

$1,000,000. is our initial goal to eradicate CML in our life-time, and that is only a starting point.

In cancer research funding we now money buys progress but you never know which dollar raised will be the one to fund a cure. It starts with your first donated dollar and we will continue until there is a world without CML.

Population(s) Served
Families
Caregivers

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 number of organization members

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

People with diseases and illnesses, Caregivers, Families

Related Program

CML Busters' US Family Support Groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

CML Buster Family Support Group members have been our primary outreach program since 2003. In 2019 we formed the CML Busters Foundation to expand this outreach to the entire US CML population.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 mission is to empower Chronic Myeloid Leukemia (CML) patients and their families to improve their Quality of Life.

Our vision is a world in which Chronic Myeloid Leukemia (CML) patients live full and abundant lives with dignity and hope while working towards cures.

We hope to t define, fund, create and maintain the tools essential to the CML community for their well being and to facilitate research towards CML cures.

Our goals are to reach and support the US CML family population and to focus funding for CML Cures.

CML warrior families are affected daily in a number of ways:

Financial - Treatments, testing and drugs are VERY expensive,

We provide resource guidance to help with families deal with this burden.

Emotional - ANY cancer diagnosis takes a toll on the family as well as the patient.

We provide for emotional support through our virtual and face-to-face monthly meetings where
peer-to-peer conversation leads to healing and allows for knowledge transfer

Educational - Education on treatment options and information on the latest CML studies is essential for open
patient doctor communication. Understanding of treatments and treatment requirements is
needed for the most successful outcomes for CML. This currently is a fast moving field of treatment.

We curate and monitor this CML data and present it through our web and social media platforms for
non-technical consumption..

Our organization is highly vested. At every level we employ the talents of CML patients and caregivers who deal daily with these issues themselves understand these needs very personally.

Our Board and leadership teams are committed to helping others with CML to help them live full and abundant lives while in treatment.

We are honored and blessed to have acquired the talent for our board to direct our efforts in all areas.

Governance from those with 20+ years of experience in the nonprofit field and financial field,
Medical from our Science Director who is a CML patient and committed to a cure.
Mission direction from our founders with over 17 years each of CML-specific family support group experience and internationally known by the CML community for their passion and presence and support group facilitators with a passion for CML families.
Fundraising leadership by a 20 veteran (ret.) of the nonprofit space in the fundraising executive leadership roles.

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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 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?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, 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, It is hard to come up with good questions to ask people, It is difficult to get honest feedback from the people we serve, It is difficult to identify actionable feedback

Financials

CML Buster 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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lock

Connect with nonprofit leaders

Subscribe

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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.

CML Buster Foundation

Board of directors
as of 09/29/2023
SOURCE: Self-reported by organization
Board co-chair

Mrs. Joan Clements

CML Buster Foundation

Term: 2019 -


Board co-chair

Ms Barbara Logue-Barish

CML Buster Foundation

Term: 2019 -

Gerald R Clements

CML Buster Foundation

Joan W Clements

CML Buster Foundation

Barbara Logue-Barish

CML Buster Foundation

Gail M Sperling

CML Buster Foundation

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

Organizational demographics

SOURCE: Self-reported; last updated 1/4/2021

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
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 08/19/2020

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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.