PLATINUM2024

Mib Agents Inc

Making It Better for kids with Osteosarcoma

aka MIB Agents   |   Barnard, VT   |  www.MIBagents.org

Mission

MIB Agents is a leading pediatric osteosarcoma nonprofit dedicated to Making It Better for our community of patients, caregivers, doctors, and researchers with the goal of kinder treatments and a cure for this aggressive bone cancer.

Ruling year info

2016

Founder & President

Ann Graham

Main address

Po Box 858 254 Sugar House Hill Road

Barnard, VT 05031 USA

Show more contact info

EIN

81-1109906

NTEE code info

Cancer (G30)

Patient Services - Entertainment, Recreation (E86)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Osteosarcoma, a primary bone cancer, is a disease that has been documented back to dinosaurs. Front-line treatment and prognosis has not changed in over 40 years. Children, who this disease usually impacts, continue to lose limbs and too often their lives to this disease. With rapid advancement in science and technology in the last 40 years we should have seen benefits in treatments and prognosis for osteosarcoma, but due to a lack of funding for research, we have not. This must change.

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?

Ambassador Agents

We pair a trained experienced warrior or caregiver with a new member of the osteosarcoma community for support during their osteosarcoma journey.

Population(s) Served
Children and youth
Caregivers

A Special Ops Mission is undertaken to provide a child in treatment for osteosarcoma with items of comfort and entertainment (iPad, iPhone, iTunes Cards, Noise Cancelling Headphones). These items are essential for children confined to a hospital bed for distraction and to block noise for rest and comfort.

Population(s) Served
Children and youth

Writers offer notes and small tokens to children in treatment.

Population(s) Served

OsteoBites is a weekly webinar and podcast where Osteosarcoma Experts share their research, clinical trials information, and innovation. The sessions are led and paneled by OsteoWarriors. All are welcome to join the live webinar, and invited to listen to or watch the recorded sessions via podcast.

Population(s) Served

Online gaming is a lifeline for many patients who feel isolated during treatment. Lead Gamer Agents are trained to game with warriors in active treatment, survivors, and siblings. We have gamers on all platforms. Gaming is more than just having fun; it provides a safe atmosphere for a child to be themselves, while interacting with their peers.

Population(s) Served

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. While we acknowledge that our hearts will never heal after the loss of a child, we want our scars to remind us that we can experience joy alongside sadness. Together, we support each other in creating a life worth living, for and with our children.

Lori Krause is a life coach with a focus on grief as well as end of life. She is a hospice-trained grief facilitator for both adults and children and is an INELDA-trained End of Life Doula; with a deep passion for relationship building; open and honest communication; healing; loving; and caregiving.

Population(s) Served

FACTOR brings together the leading osteosarcoma researchers and clinicians, along with patient families and OsteoWarriors (survivors, patients and siblings of OsteoWarriors and OsteoAngels) to Make It Better for those battling this disease. This work belongs to all of us.

Collaboration with all interested parties on advancing treatments and improving outcomes for patients with osteosarcoma. Specifically:

• Significantly improve osteosarcoma awareness and patient outcomes through collaborative disease management approach, clinical trials and dedicated osteosarcoma research.

• Brainstorm on challenges and come up with collaborative solutions to fast track improvements for osteosarcoma.

• Create a symbiotic bridge between the osteosarcoma medical and patient community to overcome challenges and create solutions.

• Evaluate funding needs for research and provide awareness for worthy initiatives and funding solutions.

• A dedicated forum to review progress on an annual basis

Population(s) Served

Prayer Agents are available for urgent or ongoing prayer requests. Whatever your spiritual practice, you are welcome to join us in support of our OsteoWarriors, OsteoFamilies, and OsteoAngels.

Population(s) Served
Children and youth
Young adults
Children and youth
Young adults
Children and youth
Young adults
Children and youth
Young adults
Children and youth
Young adults
Children and youth
Young adults

TURBO is a virtual international osteosarcoma tumor board designed to bring together multidisciplinary osteosarcoma experts across the globe to review complex cases and share experience and knowledge.

By bringing the best minds in osteosarcoma together on a regular basis, TURBO will encourage collaboration and discussion among osteosarcoma experts. With TURBO, oncologists worldwide have access to experienced and expert osteosarcoma clinicians, regardless of institution or geography.

Only physicians may participate in TURBO. MIB Agents is pleased to offer this resource at no cost to physicians or their patients.

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 participants attending course/session/workshop

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

Adults, Academics, Activists

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Number of attendees at our annual osteosarcoma research conference, FACTOR.

Number of entities served by expertise

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

Children and youth, Academics, People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Number of grants given by OutSmarting Osteosarcoma.

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 goal is to:
-Make It Better for Osteosarcoma patients through direct patient support
-Funding meaningful and impactful research
-Educating the osteosarcoma community on new and hopeful treatment and research developments in osteosarcoma by hosting the FACTOR Osteosarcoma Conference
-Bringing the osteosarcoma community together by providing programs like Ambassador, Gamer and Writer Agents.

MIB Agents has changed the landscape of osteosarcoma, through our programs, education, research, and engagement and collaboration with the research and medical community. Unfortunately, the suffering of children fighting this disease continues, so we too persevere by expanding our programs and implementing new strategies.

1. Pair a child and/or caregiver in active treatment for osteosarcoma with a child or caregiver who survived. 2. Programs that will benefit the patient and family: Gamer Agents, Family Agents, Agent Ambassadors, Prayer Agents, Healing Hearts. 3. Provide items of comfort and entertainment to the child in treatment. 4. Create end of life experiences or give comfort items for the child.

To improve outcomes for kids with osteosarcoma, we hold an annual osteosarcoma research conference. This conference brings together researchers, oncologists, scientists, and nonprofits with the patients and patient families. Together we collaborate on impactful and meaningful ways to Make It Better. Annually, we ask for proposals for how to improve osteosarcoma. With the family, community and nonprofit stakeholders who have raised $5k or more for the fund, we get together with a scientific advisory team to narrow the proposals to three. The three proposals go to all attendees of our conference and each gets a vote. The winning proposal gets $100k.

MIB Agents is the leading osteosarcoma organization that brings together the medical community working on this disease with the patient community impacted by this disease. The annual FACTOR conference (funding, awareness, collaboration, trials, and osteosarcoma research) hosts approximately 200 people that represent about 50% doctors, researchers and oncologists and 50% warriors and caregivers.

We have successfully completed every direct-patient support mission we have undertaken. Additionally, we have funded important and promising research.

2017: Joshua Schiffman, MD of University of Utah's Huntsman Cancer Institute's osteosarcoma research.
2018: Matteo Trucco, MD of University of Miami - Sylvester Comprehensive Cancer Center's osteosarcoma research.
2019: Alex Huang, MD, PhD of Case Western Reserve University School of Medicine's osteosarcoma research.

Currently selecting the 2020 $100,000 grant winner for osteosarcoma research.
FACTOR 2020 will be February 27-29 in Phoenix, Arizona.

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 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 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 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

Mib Agents Inc
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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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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.

Mib Agents Inc

Board of directors
as of 01/23/2024
SOURCE: Self-reported by organization
Board chair

Ann Graham

MIB Agents

Term: 2016 -

Gigi Jeffries

MIB Agents

John Healey

Memorial Sloan Kettering Cancer Center

Matteo Trucco

Cleveland Clinic

Alexis Johnson

Osteosarcoma Survivor and Medical School Student

Beth Odeh-Frikert

Genentech

Pete Anderson

Cleveland Clinic

Greg Kaplan

Jefferies Group

Katie Janeway

Harvard Medical School

Sherrick Murdoff

RLH Equity Partners

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 ? No
  • 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? No