MATTIE MIRACLE CANCER FOUNDATION

Arlington, VA   |  http://www.mattiemiracle.com

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 info

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

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EIN

27-1238358

NTEE code info

Cancer (G30)

Alliance/Advocacy Organizations (F01)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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Communication

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Programs and results

What we aim to solve

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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?

Needs Assessments

Design, administer, and interpret Needs Assessments for pediatric oncology clinics and hospitals to determine the effectiveness of the social and psychological services provided to children with cancer and their families.  
Needs assessments will examine the range and quality of services offered by a hospital, the patient/family participation rate, and the effectiveness of these services in meeting patients' needs. The data collected will be analyzed and interpreted to give clinics and hospitals the essential feedback necessary to improve their quality of service delivery. 
Meeting the psychological needs of patients and their families are vital for compliance with medical treatment protocols and for the overall health of the patient. 
Recommendations will be made for changes and enhancements to existing social and psychological programs as well as the introduction of new initiatives addressing patient and family needs.
For instance, the results of an assessment may reveal that parents of children with cancer would like a support group established at the hospital. Alternatively, the data may indicate that a current support group is not meeting the needs of its participants.
Such descriptive data are crucial to mental health personnel in creating and tailoring effective service offerings to patients and their families so that their psychosocial needs are met throughout the diagnosis and treatment process.
Data captured from the assessments will also guide the continual improvement of MMCF programs.

Population(s) Served

To create and maintain an On-line Resource and Referral Center.  
The first several days and weeks after a pediatric cancer diagnosis are devastating for a family. Families are confused, overwhelmed, and unsure of who to turn to for help and guidance. The stress and shock of such a diagnosis leaves families ill-equipped and uncertain of how to navigate the myriad of hospital and medical personnel leaving families with feelings of hopelessness about their child's future.
An informational website will be established posting up to date informational resources about pediatric cancers. Families will turn to this resource to have their concerns and questions answered in a timely and comprehensive fashion.  
An on-line resource center for families about pediatric cancer. The platform will have an informational tutorial about Osteosarcoma and pediatric cancer treatments, including the origin of the diseases, and how and where to turn to for help;
A social networking connection, such as a blog, chat and other resources for families to turn to each other for support;
Access to a referral center, so families may request appointments with oncologists and other professionals to speak about their pediatric cancer questions and concerns, and to request second opinions.
MMCF will build on existing resources as well as promote the referral center by providing education and instruction of its use to hospitals across the U.S. who specialize in pediatric oncology care.

Population(s) Served

To work closely with families who are in crisis. MMCF will work in conjunction with local pediatric oncology treatment centers to identify pediatric patients and families who need One-on-one Assistance and Support.  
Pediatric cancer is a family disease because the diagnosis impacts the entire family system. Many cancer treatments require long hospital stays over a one to two year period. As a result, families fight uphill battles to remain employed, intact, communicating, balanced, and viable through this ordeal.
Identified families will be assigned a MMCF Case Manager, who will help assist families through crises. This will entail daily check-ins, help in locating appropriate mental health and/or social services, and most importantly establish for families a relationship with a trained professional who will be an advocate.

Population(s) Served

To work closely with families who are in crisis. MMCF will work in conjunction with local pediatric oncology treatment centers to identify pediatric patients and families who need One-on-one Assistance and Support.  
Pediatric cancer is a family disease because the diagnosis impacts the entire family system. Many cancer treatments require long hospital stays over a one to two year period. As a result, families fight uphill battles to remain employed, intact, communicating, balanced, and viable through this ordeal.
Identified families will be assigned a MMCF Case Manager, who will help assist families through crises. This will entail daily check-ins, help in locating appropriate mental health and/or social services, and most importantly establish for families a relationship with a trained professional who will be an advocate.

Population(s) Served

To promote Public Awareness and Education of Osteosarcoma and other Pediatric Cancers.
MMCF is committed to educating and promoting public awareness about Osteosarcoma and Pediatric Cancers, and will accomplish this in several ways.
Sponsor an annual, “March for a MMCF Miracle” walk-a-thon during which we will raise funds and awareness about osteosarcoma and pediatric cancers. 
Conduct training sessions for medical personnel regarding the impact of cancer on the entire family system; 
Create an on-line resource center that offers materials and links to information regarding pediatric cancers, as well as a handbook that outlines how to navigate through a hospital system from time of diagnosis through treatment; 
Host Special day/holiday-themed activities for children in a hospital setting, coordinated with hospital staff (i.e. ChildLife and Art Therapists), and provide access to informational resources for families attending these events.

Population(s) Served

Where we work

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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 invitations for advocates to speak as experts

This metric is no longer tracked.
Totals By Year
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

This metric is no longer tracked.
Totals By Year
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

This metric is no longer tracked.
Totals By Year
Related Program

Support

Context Notes

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

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.

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. 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

Financials

MATTIE MIRACLE CANCER FOUNDATION
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Operations

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

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MATTIE MIRACLE CANCER FOUNDATION

Board of directors
as of 6/18/2019
SOURCE: Self-reported by organization
Board chair

Victoria Sardi-Brown

George Washington UNiversity

Term: Nov 2009 - Oct 2012

Victoria Sardi-Brown President, Co-founder, Mattie's Mom

George Washington University

Peter Brown Secretary, Co-founder, Mattie's Dad

Voxiva Inc

Peter Keefe Treasurer

Avenir Corporation

Ann Henshaw Director

No Affiliation

Robert Henshaw Director

Orthopedic Oncology at the Washington Cancer Institute, Washington Hospital Center, Georgetown University Medical Center, Children's National Medical Center, Surgical Branch- National Cancer Institute

Nita Seibel Director

Clinical Investigations Branch of the Cancer Treatment and Evaluation Program, National Cancer Institute (NCI)

Aziza Shad Director

Lombardi Pediatric Cancer Center, Georgetown University Medical Center

Tamra Bentsen Director

National Coalition for Cancer Survivorship (NCCS)

Brett Thompson Board Member

Banner Public Affairs

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