MATTIE MIRACLE CANCER FOUNDATION

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