AWARENESS
We're Setting A New Standard For Raising Awareness
Focusing on a child and family's psychosocial needs across the cancer trajectory
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We take a multi-pronged approach to furthering public understanding of what childhood cancer is, who it impacts, and how childhood cancer is as much a psychological disease as it is a physical one.
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We sponsor an annual childhood cancer awareness walk that has educated thousands of people and raised over $1M.
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We conduct training sessions for medical personnel on the psychosocial impact of a cancer diagnosis and its treatment on the entire family unit.
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We provide on-line support to families affected by childhood cancer.
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We speak at schools, universities, and national conferences spreading the mission of the Foundation.
RECENT SUCCESS
Supporting Non-Profits
February 2023
In the Fall of 2022, the co-founders of Zach's Bridge, reached out to the Mattie Miracle Cancer Foundation. Zach was their only child and after a courageous journey against Osteosarcoma, Zach died in November of 2021, at the age of 16. Zach's Bridge was created in his memory.
Zach's family experienced a gap in support while facing advanced pediatric cancer and found it close to impossible to find a peer willing and able to lend support. Zach’s Bridge helps families navigate advanced pediatric cancer through peer support. Their goal is to ease the journey and give the entire family comfort and time to focus on what truly matters to them.
Mattie Miracle is honored to serve on the Zach's Bridge Advisory Council, to be a part of Zach's legacy work, and to help other families cope when a medical cure for their child is not possible.
Reflections from Jon Wall (Co-Founder & President of Zach's Bridge):
"When we started exploring ways to help the next pediatric cancer family, we saw that there were many organizations that provided research funding, and others that provided family support largely at the start of the diagnosis or after the death of a child. But organizations that help a family with connection, guidance and support from the time of a terminal diagnosis didn't really exist. When Zach was in the late stages of his journey, we had looked for peers who had gone through what we did and it was almost impossible to find them. It's such an overwhelming time as a parent and while there are actually a broad range of resources available, when faced with the end of your child's life, it can be hard to find, understand and use them. So we decided to put together a service that connects families with an experienced, bereaved, trained peer who can provide connection, thoughtful conversation, guidance and access to curated resources. We do this because we want to ease this journey and give the entire family comfort and time to focus on what truly matters to them."
Reflections from Jenn Wall (Co-Founder & Executive Director of Zach's Bridge):
"As we explored how to do this, Mattie Miracle came up a few times in conversations and it seemed like it was very connected to the idea that was forming around Zach's Bridge, and one of the only organizations that really focused on the psychosocial impact on the child. Once we connected with Vicki and Peter, it was immediately clear that we both had similar viewpoints and that Mattie Miracle had done a spectacular job building awareness and providing resources to help children and families facing pediatric cancer. We knew very quickly that based on our common experience of losing a child to cancer, and the thoughtfulness and experience that Peter and Vicki could offer, that we wanted them to help both guide the development of Zach's Bridge, as well as assist future families. Therefore, we asked Vicki and Peter to join our advisory council and we are so grateful they accepted our invitation."
Community Partnership
October 2022
In 2013, Mattie Miracle held its first Psychosocial Think Tank at the American Psychosocial Oncology Society (APOS) annual conference in Huntington Beach, CA. That event launched our long-term collaboration with APOS. We consider APOS to be our professional and research home.
APOS is the only multidisciplinary organization in the United States dedicated to researching and treating the psychosocial aspects of cancer. APOS is committed to our vision of the implementation of the Psychosocial Standards of Care at treatment sites around the country and to help achieve this goal we are honored to house our early career psychosocial research grants at APOS.
In honor of September being Childhood Cancer Awareness month, we have officially become APOS' first community partner, We view this decision as a positive step that further unites healthcare professionals and advocates together on a common cause.
Reflections from
Elizabeth Archer-Nanda, DNP, APRN
(APOS President)
On behalf of the APOS Board of Directors, we are thrilled to announce Mattie Miracle as our first Honorary Community Partner! We are so grateful for your continued support and significant contributions and look forward to continuing our relationship for many years to come
Thank you for your longstanding commitment to the mission, vision, and values of APOS. We are so honored to extend this first honorary community partner to you and the Mattie Miracle Cancer Foundation.
It is through continued great partnering with advocates such as the co-founders of Mattie Miracle that we will continue to make a difference! We are truly grateful that you have chosen APOS as your partner organization and for all the work you continue to do to honor the importance of psychosocial/psychological care for patients and their families.
May there continue to be great meaning in our shared work and the long legacy of Mattie and Jimmie Holland.
Our Partnership
March 2022
Dr. Joseph Greer (APOS President, 2021-2022) and Dr. Charles Kamen (APOS Program Planning Committee Chair, 2021-2022) share their reflections on Mattie Miracle's 10 year partnership with APOS:
Since 2013, the American Psychosocial Oncology Society (APOS) and Mattie Miracle Cancer Foundation have developed a longstanding and highly productive collaboration to ensure that every child and family affected by cancer receives comprehensive psychosocial support. This partnership has flourished over the years through a variety of initiatives including the creation and promotion of evidence-based standards of care, rigorous clinical research, and patient-centered programs and services. In 2020, APOS launched the Community Spotlight program as one of its Diversity, Equity, and Inclusion Task Force initiatives. The goal of this program is to showcase psychosocial oncology services, programs, and events that are happening in the community, outside the walls of academia. This year, in 2022, APOS was immensely pleased to spotlight the Mattie Miracle Cancer Foundation as a key community partner during the annual conference, elevating efforts by community-based organizations to advance practice-changing psycho-oncology research and program development in collaboration with APOS members.
Of note, the Mattie Miracle Cancer Foundation has partnered with APOS to create Early Investigator and Mattie Miracle Implementation Grants (click on the Letter of Intent link to learn more and apply), which have funded 15 innovative projects to date. At the 2022 Annual APOS Conference, some of this work was highlighted with an exciting symposium focused on lessons learned in implementing the Pediatric Psychosocial Oncology Standards of Care. Specifically, APOS members presented findings from their projects regarding a peer-to-peer mentoring program for parents of children recently diagnosed with cancer; surveys and programs to provide systematic psychosocial screening and comprehensive support for siblings of youth with cancer; and the use of digital health interventions to assess adherence to oral chemotherapy in adolescent and young adults as well as to implement a community-based ehealth program to bolster coping skills and psychosocial support for parents and families.
The Mattie Miracle Cancer Foundation also recently announced that it would again partner with APOS to renew the call for applications and fund additional research projects aimed at implementing the Pediatric Psychosocial Oncology Standards of Care. These projects will not only help launch the research careers of dedicated APOS investigators but also accelerate the development and dissemination of novel, evidence-based psychosocial services for children and families affected by cancer. It is truly an honor and privilege to continue working so closely year-over-year with Dr. Victoria Sardi-Brown, Mr. Peter Brown, and the Mattie Miracle Cancer Foundation. APOS thanks you for all you do and your continued support!
Spreading our Psychosocial Message
March 2021
Mattie Miracle was interviewed by Mark Levine, the host of Help and Hope Happen Here, a national Podcast designed to enhance awareness of childhood cancer by interviewing advocates and professionals who are passionate about improving the lives of children with cancer. Mark is a gifted interviewer, who investigates his subject matter thoroughly before conducting an interview. His level of professionalism and preparation were greatly appreciated as Mattie Miracle feels Mark did an outstanding job highlighting our 12 years of service to the childhood cancer community in 60 minutes.
Minute 1 - 15:
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Mattie and his cancer diagnosis
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Learning Mattie had cancer
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Mattie's medical treatments
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When metastasis occurred
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Mental health evaluation and diagnosis
Minute 16 - 30:
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Starting Mattie Miracle
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The mission and why it's important to focus on psychosocial care
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Our Programs: Awareness, Advocacy, and Psychosocial Support
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Only non-profit dedicated to psychosocial issues
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The Standards Project
Minute 31 - 35:
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What the Standards of Care have revealed
Minute 36 - 40:
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Work on Capitol HIll
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Creation of a House of Representatives Resolution
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First psychosocial symposium on Capitol Hill
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STAR Act
Minute 41 - 46:
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Our connections with psychosocial leaders
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Professional organizations endorsing the Standards
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Unfolding of the Standards within the community
Minute 47 - 60:
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Open access to the Standards of Care
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Standards Toolkit
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Money raised to date
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Funding Child Life Specialists
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Our 5-10 year vision
We invite you to listen to this 60 minute Podcast, highlighting Mattie's life, and Mattie Miracle's psychosocial work over the last 12 years.
Spreading Awareness at JMU
October 2020
Mattie Miracle was contacted by Kelly Cross, a student at the James Madison University. Kelly is taking a class which required her to reach out to a non-profit of her choosing. The assignment entailed learning about an organization, interviewing a board member, writing a report, and presenting it to her class.
Kelly heard about Mattie Miracle from her mom. Her mom is a teacher, who recently had a student diagnosed with cancer. As a result, Kelly wanted to learn more about childhood cancer and the organizations which support children and their families. On September 16, Kelly spoke to Mattie Miracle's president.
After the hour long interview and hearing about Mattie Miracle's mission, our activities, and accomplishments, she expressed her amazement. Kelly said, "I have volunteered with other non-profits, and from my experience most tend to be grass roots based and support local initiatives. Mattie Miracle not only helps children and families on the local level, but through the Psychosocial Standards of Care, the Foundation has the potential to change the cancer experience for EVERY child and family."
Click on Read More, to read Kelly's article on Mattie Miracle.
The Promise Docuseries interviews Mattie Miracle's Co-Founders
October 21, 2019
On Monday, October 21, the co-founders of Mattie Miracle had the opportunity to be interviewed by Kristi Gatto, the founder of Risk It Productions, an award-winning, full service production company that was founded in 2016 as a way to create meaningful content. Kristi is producing a 7 part docuseries entitled, The Promise: A Documentary on Childhood Cancer. It is important to note that Kristi and a fellow childhood cancer advocate are rising funds from the non-childhood cancer community to produce this video. This docuseries is targeted to an audience unaffected personally by childhood cancer.
We were very impressed with Kristi's preparation for our interview. Prior to meeting us she asked to see photos of Mattie (pre-cancer and with cancer), she wanted to know about his life, our interests, and of course our work with Mattie Miracle. Kristi and her team came into our home to interview us for about 90 minutes.
Kristi did not share her interview questions with us ahead of time because she wanted us to provide genuine, real world responses to her thought provoking questions. Our portion of the docuseries was to discuss the psychosocial issues that arise from a cancer diagnosis. Kristi particularly wanted our insights on this as she knew Mattie Miracle's president is a licensed mental health professional. We explained how Mattie's mental health issues were discovered by us and how we went about getting the help Mattie needed for his depression, anxiety and medical traumatic stress (all issues that arose three months into medical treatment). We also highlighted how our experiences with Mattie lead to the development of the Mattie Miracle Cancer Foundation and our vision for the creation of the Psychosocial Standards of Care (Standards that will provide optimal psychosocial care for children with cancer and their families from diagnosis, through treatment, and into survivorship or end of life and bereavement care).
Mattie Miracle is honored to be a part of this docuseries. As we feel it is vital to share the importance of providing psychological and social support to both the child with cancer and the family, since psychosocial support improves health outcomes and quality of life. To get a feeling for the intensity of our interview, watch the clip below. Stay tuned for the final product.
Mattie Miracle's 6th year at Curefest
September 22, 2019
On Sunday, September 22, Mattie Miracle participated at Curefest on the National Mall. September is Childhood Cancer Awareness Month. In honor of this, the childhood cancer community unites as one voice against childhood cancer. Families impacted by childhood cancer gather and walk three miles around the US Capitol and the Washington Monument, network with each other, and raise awareness for the number one killer of children by disease in our country.
For six years, Mattie Miracle has participated at this national awareness event with 80 other childhood non-profits from around the country. At the event, we have our own tent which provides information about the Foundation and about the importance of psychosocial care, as well as a lot of fun take-aways for children and teens. We are honored each year that families come to visit us and share their powerful psychosocial stories with us. As their stories continue to validate our mission that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINETM.
One of the themes we heard from most parents this year was that their child, who survived treatment, is now having many emotional and social issues that are impacting the family and the school. We could hear the exasperation and exhaustion in the voices of moms and dads, who are desperate to find help and community resources. Resources that understand the psychosocial issues that arise from cancer treatment. Mattie Miracle understands that the psychosocial issues do not end for the child or the family once the medical treatment does, which is why we had the vision to create evidence based Psychosocial Standards of Care. As Standard #3 focuses on the importance of having access to Psychosocial Follow-Up in Survivorship. Our hope is that with implementation of the Standards, that this terrible void experienced by the cancer community can be effectively addressed. Not just addressed with one child and family, but with EVERY child and family touched by cancer.
Mattie Miracle is also particularly grateful to Lynda. Lynda lives in upstate New York and her son, Charlie, died from DIPG (a brain cancer). In 2016, we first met Lynda and Charlie at Curefest. Charlie entered our tent to learn more about the Psychosocial Standards of Care. Charlie was a teenager in treatment and felt his hospital wasn't meeting his needs or that of his fellow patients. So literally he took our Standards brochure back to his institution and told them.... 'here is the scientific evidence, NOW do something to help support me and the other kids.'
Each year, Lynda comes to visit our Foundation tent to give us an update. This year she let us know that the hospital Charlie was treated at listened to him and his request. There is now a psychosocial program devoted to helping families throughout the cancer journey. Lynda thanks Mattie Miracle and ultimately Mattie for the Standards, and we of course thank her and Charlie. The Foundation can have the vision to create the Standards, but it was Charlie who advocated for the implementation of the Standards at his hospital. A beautiful story that speaks to the power of advocacy and how one voice can great a legacy to improve the overall quality of care for children with cancer.
Spreading the Psychosocial Message to High School Students
January 22, 2019
Mattie Miracle was invited to present three 45 minute sessions at the St. Stephen's and St. Agnes High School's Colloquium for the Common Good. The Colloquium was designed to inspire students to learn, deeply think, and reflect upon challenging social issues.
The title of our session was, Life unscripted: From a family’s crisis to a national non-profit. The description of our session was....
Life does not always go as expected or even as we hoped. Yet when faced with a crisis and a loss, how do we cope? What do we do? Through role plays, team games, and thoughtful participant discussion, you will have the opportunity to hear our childhood cancer story, learn about the development and work of the Mattie Miracle Cancer Foundation, and strategize ways for teens to get involved in supporting our mission to help children with cancer.
Given the audience we were educating, we purposefully designed age-appropriate curriculum addressing childhood cancer that would engage the students without instilling fear. Through role plays, a matching fact game, a Foundation video, and a group challenge, we raised awareness of the psychosocial issues children with cancer and their families face. In addition, we invited these teens to brainstorm ways they can help spread awareness of childhood cancer at their school.
We wanted to end the session on a fun and memorable note. So we provided candy treats and a corn hole tournament. Candy and corn hole reflect some of the Foundation's activities, as we host an annual Post Halloween Candy Drive (which stocks our in-patient Snack/Item Carts) and Corn Hole Tournament (which raises funds to run our psychosocial programs) at our annual Walk & Family Festival.
Curefest 2018 on the Washington Capitol Mall
September 16, 2018
Every September, the childhood cancer community unites on the Capitol Mall as one voice against childhood cancer. Thousands of people walk three miles around the US Capitol and the Washington Monument, network with each other, and raise awareness for the number one killer of children by disease in our country.
This is Mattie Miracle's fifth year at Curefest, spreading awareness about the importance of psychosocial support in cancer care and to remind advocates that Childhood Cancer is NOT just about the medicine. The event enables families to unite together and support one another through their family's cancer journey.
We met hundreds of people under our Mattie Miracle tent. However, one mom (Linda) in particular left a lasting impression on us. Her son, Charlie, had just died a week ago. Yet she bravely came to this event to honor her son's memory. Linda told us that she and Charlie had met us two years ago at Curefest. Linda wanted us to know that we made an impression on Charlie, so much so that he took our brochure highlighting the Psychosocial Standards of Care back to his treatment center in Syracuse., NY Charlie used our brochure to advocate for psychosocial support for himself and other teenagers at his hospital. Charlie changed the nature of how supportive care is now provided to others and we are honored to be a part of his legacy.
Mattie Miracle Mentioned During NCI's Webinar on the Psychosocial Impact for Childhood Cancer
The National Institutes of Health's National Cancer Institute (NCI) recently held an hour long webinar discussing the psychological and social impacts that childhood cancers have on the children, their siblings, parents, friends and others – and how research and therapies are being created to address these needs. Presenting during the webinar were Dr. Lori Wiener and Dr. Maryland Pao, both research team members of Mattie Miracle's Standards project.
Sharing a parent perspective at the Institute of Medicine workshop on Comprehensive Childhood Cancer Care
In March 2015, The Institute of Medicine's (IOM) National Cancer Policy Forum and the American Cancer Society hosted a workshop in Washington, DC entitled, Comprehensive Cancer Care for Children and their Families. The workshop convened a multidisciplinary group of renowned health care professionals that highlighted the importance of integrated cancer care for children and their families. Mattie Miracle shared a parent perspective at this key conference and was proud that so many of the core psychosocial professionals working with the Foundation on the Standards of Care Project were represented at this event.
National Sponsorship at CureFest 2015 on the Washington Capitol Mall
In September, the childhood cancer community and the general public unite on the Capitol Mall as one voice against childhood cancer. Thousands of people walk three miles around the US Capitol and the Washington Monument, network with each other, and raise awareness for the number one killer of children by disease in our country. Mattie Miracle is proud to participate and sponsor this national event, an event which enables families to unite together and support one another through their family's cancer journey. Read more about CureFest HERE
American Psychosocial Oncology Society Distinguished Public Service Award
In February 2013, Jimmie C. Holland, M.D., widely recognized as the founder of psycho-oncology, awarded the co-founders of the Mattie Miracle Cancer Foundation with a Distinguished Public Service Award at the American Psychosocial Oncology Society Conference in Huntington, Beach, CA. Mattie Miracle was awarded this honor for spearheading the national psychosocial standards of care project for childhood cancer and hosting the first pediatric think tank at the conference.
