Disease, Disorders, Medical Disciplines

MATTIE MIRACLE CANCER FOUNDATION

Arlington, VA

Mission

The Mattie Miracle Cancer Foundation is dedicated to increasing childhood cancer awareness, education, advocacy, research and social support to children, their families, and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality medical and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives.

Notes from the Nonprofit

Mattie Miracle Cancer Foundation is dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families, and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives.

Mattie Miracle builds awareness of childhood cancer in the general public, in our lawmakers who determine where the hundreds of billions of dollars go each year, and in the medical profession who have direct contact with children who have cancer. Cancer is a devastating disease for a child, and it is heart breaking and challenging at times for a family and community to know how to support a child through this journey.

When childhood cancer strikes a child, the best medical care we can offer children entails months and years of intense treatment and pain. The aftermath of such treatments can leave children with intense disappointment, sadness, mental health issues and in some cases secondary cancers, and death. Although some children are lucky enough to survive this ordeal, they are left with a lifetime of impairments and complications such as the mental and emotional trauma of having faced and survived cancer.

Mattie Miracle intends to make a difference. We will reach as many children as we can and commit and dedicate ourselves to the vision of a world that has access to a minimum level of psychosocial support from the time of diagnosis, through survivorship, or end of life and bereavement care. A world in which children and their families have access to psychological, emotional, and social support necessary to navigate the day to day cancer journey.

Mattie Miracle seeks to address the psychosocial issues associated with childhood cancer head on, and we will not stop until we have made these issues a priority alongside the medical care of the disease. Using awareness campaigns and education, support services, coordinated care and research, we believe we will make a difference, and help children and their families manage and cope with childhood cancer so they not only live to tell the tales of how they beat cancer, but are able to do this with dignity and a high quality of life.

Ruling Year

2010

Chairman, President and Co-Founder

Victoria Sardi-Brown Ph.D.

Director, Secretary and Co-Founder

Peter Brown MBA

Main Address

PO Box 6485

Arlington, VA 22206 USA

Keywords

childhood cancer pediatric psychosocial psychological support education awareness advocacy

EIN

27-1238358

 Number

5024755796

Cause Area (NTEE Code)

Cancer (G30)

Alliance/Advocacy Organizations (F01)

Alliance/Advocacy Organizations (E01)

IRS Filing Requirement

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Programs + Results

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Needs Assessments

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Research

Education and Awareness

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Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of invitations for advocates to speak as experts

TOTALS BY YEAR
Population(s) served

General/Unspecified,

People with cancer

Related program

Education and Awareness

Context notes

We are regularly asked to speak about the evidence-based psychosocial standards of care for children with cancer and their families, and the methodologies employed in their development

Number of organizations signing onto policy guidelines or proposals

TOTALS BY YEAR
Population(s) served

General/Unspecified,

Academics,

People with cancer

Related program

Research

Context notes

National level organizations are endorsing the evidence-based psychosocial standards of care for children with cancer and their families, as an essential component of comprehensive cancer care

Average number of service recipients per month

TOTALS BY YEAR
Population(s) served

General/Unspecified,

People with cancer

Related program

Support

Context notes

Our locally-based programs directly affect childhood cancer patients and their families.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

Mattie Miracle's three to five year goal is to expand its psychosocial programs and services to other local hospitals. Such an expansion will entail funding additional child life specialists at these facilities and potentially adding free snack carts and nurse support group luncheons. However it would be important to assess the needs of other local hospitals to determine the programs and positions that would need to be designed to meet their psychosocial care needs. We realize each hospital system operates independently and in order for patients and families to be served effectively, the Foundation has to understand these environments.

Our long term goal, is to educate, advocate, and help implement and apply our developed psychosocial standards of care to local hospitals in order to guarantee a minimal level of care to children with cancer and their families from time of diagnosis, throughout treatment, and into survivorship or end of life and bereavement care.

The Foundation is successful in terms of generating ideas, in its ability to work hard and get things accomplished without paid staff and a robust operating budget, and we have a way of networking with people within our community to get the job done. Our continual challenges and obstacles are fundraising, increasing our visibility, and being able to take more work on without professional staff to help us achieve our goals.

Mattie Miracle is working with a team of over 40 psycho-oncology professionals to develop a standard of psychosocial care (standards which are based on evidence based research and professional consensus) that can be implemented at the local level as well as advocated for on Capitol Hill. The other programs we have adopted to address childhood cancer awareness and the psychosocial needs of children with cancer and their families within our community are:

1. The endowment of the Mattie Miracle Child Life Program Fund at the MedStar Georgetown University Hospital. This fund supports a child life specialist position. For the past three years, this specialist assisted over 3,500 children and families on scan and procedure days.
2. A 2,500 pound candy donation and toiletry item donation once a year to MedStar Georgetown University Hospital;
3. The operation and supply of a free snack cart for in-patient pediatric families at MedStar Georgetown University Hospital. This enables families to stay with their children and not have to leave the Hospital floor for food and incidentals;
4. Presentations at local schools about childhood cancer and overseeing several high school service learning projects;
5. Email support to families who have received a childhood cancer diagnosis;
6. Distribution of monthly e-newsletters about the Foundation to supporters;
7. Monthly support group luncheons for pediatric nurses at MedStar Georgetown University Hospital, and
8. Advocacy on Capitol Hill to include language for psychosocial support for children with cancer and their families in the legislation (H. Res. 262).

Our other target population is the non-cancer community. Our goal each year is to enhance awareness and educate others on the diagnosis, treatment, recovery, and psychosocial impact of childhood cancer on children and their families. Currently, we educate hundreds of people each year about childhood cancer. We make numerous visits to Capitol Hill to advocate for children with cancer and their families, and the child life specialist, items, snack cart, and monthly support group luncheons for pediatric nurses that we financially support help thousands of individuals impacted by cancer at MedStar Georgetown University Hospital each year.

A pass through the childhood cancer advocacy space will show you that the vast majority of activity from grass roots on upwards to national organizations is primarily focused on raising money for the research of better medical treatments and cures for the various types of childhood cancers. Few organizations focus on the psychological, social, and emotional support needs of children and their families living with childhood cancer. Therefore our mission is to focus on this much needed area. As we are known to say, "even if there was an 100% cure rate for all childhood cancers, there still would be devastating psychological, social, and emotional affects from the disease that would need to be addressed." We work collaboratively with any and all childhood cancer advocacy groups and organizations because the psychosocial care and support are a natural complement to the overall medical care and treatment of patients and families.

Our personal experiences, our proximity to Capitol Hill, our tightly knit network of psychosocial researchers, clinicians and leaders of their field have brought together and into focus an intensity never seen in the childhood cancer psychosocial space. There is a medical standard of care for all childhood cancer diagnoses, but there is no standard of care for the psychological, social and emotional needs of a child with cancer and their family, and we are intent to establish one.

1. Establishment of a national standards for psychosocial care for children with cancer and their families.
2. Publication of said standards in a tier-1 peer reviewed journal, and acceptance by the scientific community of the standards.
3. Adoption of standards in the accreditation programs for hospital and clinical settings.
4. Inclusion of standards in regulations, legislation and/or executive orders.
5. Development of clinical practice guidelines providing for the psychosocial care of children and their families based on the standards.

1. Faster development of the standards of care (although we are imminently finishing in Fall 2015).
2. Development of clinical practice guidelines to support the application of the standards
3. Adoption of and incorporation in accreditation standards
4. Broader inclusion of standards in clinical education programs and curriculum
5. Inclusion in legislation and regulations requiring that the psychosocial needs must be met

External Reviews

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Financials

MATTIE MIRACLE CANCER FOUNDATION

Fiscal year: Jul 01 - Jun 30

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Operations

The people, governance practices, and partners that make the organization tick.

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Board Leadership Practices

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SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Race & Ethnicity

This organization reports that it does not collect this information.

Sexual Orientation

This organization reports that it does not collect this information.

Disability

This organization reports that it does not collect this information.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity