Each time a child is diagnosed with cancer or a blood disorder, a family’s world is turned upside down. With the diagnosis come feelings of shock and helplessness. Life used to be about schoolwork, soccer games, and sleepovers. Now it’s about blood tests, spinal taps, and exhausting new treatment routines. On top of that there is overwhelming worry about the child’s recovery and survival. The family is thrust into a frightening new reality.

“Children with cancer and blood disorders not only suffer physical side effects but social and psychological trauma as well that can also affect the entire family,” says Dr. Steven Halpern, medical director of The Valerie Fund Children’s

Center at Goryeb Children’s Hospital. “These children will often be out of school for an extended period due to their underlying illness, and they can feel isolated. Our philosophy is that we treat a child, not a disease.”

Through the seven Valerie Fund Children’s Centers, emotional and psychological support is seamlessly integrated with a child’s medical care at every visit, and family members are supported as well.

The treatment teams comprise physicians and nurses as well as psychosocial staff, such as child life specialists, social workers, educational liaisons and psychologists. The Valerie Fund specialists begin forming relationships to guide the child

and family beginning at diagnosis, throughout treatment and beyond. They understand that families react in a number of ways to the stress of having a critically ill child or sibling, and that each member is impacted differently. Some families quickly rally and become stronger, while others show signs of fracture in the face of learning an entirely new vocabulary and making major treatment decisions. Keeping family members strong is a central part of our commitment so they can best support the sick child.

Our caregivers serve as practitioners, counselors, confidantes, and advocates along the patient’s journey.

THE VALERIE FUND’S IMPACT

Campaign Planning Study | Fall/Winter 2015-2016

The Valerie Fund’s mission is to provide support for the comprehensive health care of children with cancer and blood disorders.

CASE FOR GROWTH AND EXPANSION

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Nearly forty years after Ed and Sue Goldstein’s daughter Valerie lost her courageous fight against cancer, the need for comprehensive care close to home is greater than ever in New Jersey. Here are three of the leading reasons why.

1. In the decades since The Valerie Fund first brought pediatric hematology-oncology centers to New Jersey, treatment protocols are no longer limited to major academic centers. The standard treatment for cancer – because of clinical advances and the realities of insurance coverage – is now provided as outpatient care, making access to care close to home more important than ever.

2. Survival rates for many types of cancer have increased. Nationally, more than 80 percent of children treated for cancer are considered long-term survivors who need to be monitored for late effects of illness and treatment. As this relatively new treatment area evolves, many more resources will be needed to support a Valerie Fund survivorship program, also known as a late effects program, which patients begin once they are two years off of treatment.

3. With the increased visibility of The Valerie Fund and its excellent reputation for compassionate care, more patients seek treatment at The Valerie Fund Children’s Centers. Valerie Fund Centers host more than 25,000 patient visits each year. We have expanded staff in key areas like social work and child life, which for many years was the totality of psychosocial care, and have added services that have proven to enhance quality of life for patients and families, including those that lower levels of pain and stress.

Through donor generosity and effective management, The Valerie Fund’s capacity to serve patient needs has also grown in recent years. Since the recession, our revenue from contributions has doubled from $2 million to $4 million. In 2014, we were able to increase our direct support of hospital-based outpatient programs for children fighting cancer and blood disorders by $600,000. Yet we have reached a point

where there is a growing gap between demand for our services and our rate of growth. Not all services are available at all centers and as we look at the future, we will need additional resources to meet the evolving needs of the families in our network. The Valerie Fund’s approach, once considered novel, is now hailed as the standard of care by pediatric hematology-oncology experts at our centers. We also feel a responsibility to address the pressing needs of children and families who are especially vulnerable in the face of a health crisis.

The Valerie Fund has identified three strategic objectives to meet these needs and enable greater numbers of children and families to receive the best possible care close to their homes and ensure their long-term health.

The cost of these priorities is $7.5 million. The Valerie Fund is poised to launch its first-ever capital campaign based on donor interest in the priorities set forth in this test case.

A CALLING TO DO MORE

Child life specialists

Oncology social workers

Hematology social workers

Educational liaisons

Psychologists

Integrative medicine specialists

Psychosocial nursing support

Late effects coordinators

Patient navigators

Palliative care coordinators

Hemophilia/thrombophilia coordinators

PSYCHOSOCIAL CARE TEAM

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“The staff at The Valerie Fund was fantastic. I felt so comfortable there, and they took great care of me. They saved my life, and I’ll be connected to them forever.” NYU graduate Meghan Gambichler, age 22, diagnosed with T-cell lymphoblastic lymphoma in 2008

STRATEGIC OBJECTIVES SERVING NEW COMMUNITIES OF NEED: $2.5 MILLIONThe Valerie Fund was established out of recognition that families from underserved communities must travel greater distances for specialized care, a significant hardship when weekly treatment is required for extended periods. The greatest unmet need in our service area is Passaic County, NJ. Passaic is the state’s fifth most densely populated county, with a population estimated at more than 500,000. To serve this community, and neighboring areas in Sussex and Bergen Counties, The Valerie Fund would like to open its first new treatment center in 15 years at St. Joseph’s Children’s Hospital in Paterson. The hospital provides state-of-the-art clinical care for children with cancer and blood disorders, but lacks virtually all of the psychosocial program components of a Valerie Fund Children’s Center. A child's diagnosis of cancer or a serious blood disorder hits every family hard. Those with fewer financial resources bear an additional stress, making social work services critical for counseling, access to outside resources, and overall support. In two-parent families, one parent may have to stop working to be with the child for months or even years, depending upon the illness. And single parents must face the crisis alone. Child life specialists, educational liaisons and psychologists give parents, siblings and other key family members guidance and support when they need it most. Not only would families at St. Joseph’s benefit from the additional services The Valerie Fund would bring, but clinicians would also gain through the sharing of ideas as part of The Valerie Fund consortium, which includes some of the region's top specialists. The proposed new center would immediately become one of the three largest Valerie Fund Centers, with approximately 6,000 patient visits per year and 1,500 patients. The estimated cost of establishing a new center is $2.5 million, which provides funding for the first five years of operation.

GUARANTEEING A STANDARD OF CARE: $4 MILLIONThe Valerie Fund is committed to offering families a robust menu of psychosocial care throughout the network. The psychosocial services provided by The Valerie Fund have a tremendous impact on a child’s quality of life, from the first days of treatment through long-term follow-up care continuing into adulthood.

Midway through a five-year strategic plan, the Board of Trustees has authorized many new positions and programs, including the creation or expansion of the educational liaison, late effects and palliative care programs. Over the last decade the use of palliative care has been broadened so that it may be used at any stage of disease to relieve symptoms and side effects, including pain, discomfort, and stress, and to improve quality of life. A palliative care program is available at several Valerie Fund Centers and will be expanded to others. Approximately $150,000 per year is required to support each palliative care program.

While more children are surviving cancer, survival comes at a cost. Many cancer treatments cause severe health issues, called late effects, throughout life. Late effects include cardiac problems, cognitive and growth disorders, vision problems, and risk of a second cancer. Therefore, cancer survivors need careful medical follow-up throughout life. Additional funding for newly established late effects programs will allow The Valerie Fund to expand their scope and breadth.

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Children’s Hospital of Philadelphia/Voorhees

Columbia University Medical Center

Monmouth Medical Center

Morristown Medical Center

Newark Beth Israel Medical Center

Overlook Medical Center

Saint Barnabas Medical Center

CHILDREN’S CENTER

LOCATIONS

THE CAMPAIGN PLANNING STUDY | THE FIRST STEP Since 1976, The Valerie Fund has provided hope and support to children and families in need. We have been able to do so because of the generosity of donors like you. Today, we hear a calling to do more. We hope you will help us determine our ability to answer that call by completing a brief campaign planning study eSurvey.

The Valerie Fund has retained The Munshine Group to conduct the study on its behalf. The study seeks the input of a cross-section of Valerie Fund supporters, including beneficiaries, current and past volunteers, other donors and friends of the organization.

While taking the eSurvey, you will be asked to share your perceptions of The Valerie Fund and to answer questions about this test case for support. At the end of the study, The Munshine Group will present its findings and recommendations for a campaign to the Board of Trustees.

Your involvement will help inform our decision-making and will be greatly appreciated. We thank you, on behalf of everyone served by The Valerie Fund, for your continued support of our mission!

RESEARCH AND SCHOLARSHIPS: $1 MILLION

Through its network of Centers at leading area hospitals, The Valerie Fund clinicians treat a large patient population. We now wish to harness the power of this network to gather and analyze learnings about how psychosocial services impact health and quality of life of patients and their families. Not only does this provide an opportunity to learn from our patients, it also provides an opportunity to contribute to the field that will ultimately benefit patients inside and beyond The Valerie Fund network.

Recently, we have dramatically increased scholarship levels for current and former patients attending post-secondary school, whether vocational and community colleges, four-year colleges, or major universities. This year, nearly $250,000, ranging from $500 to over $15,000, was awarded to 72 Valerie Fund patients. In recognition of the many patients whose career choices are impacted by their experience with cancer or blood disorders, we will expand this program through the proposed campaign. The Valerie Fund will also support those extraordinary young women and men pursuing graduate school for careers in medicine or psychosocial care—from physicians to social workers to child life specialists to psychologists. We firmly believe that they will bring a critical dimension of compassion and motivation as they care for the next generation of children.

“The Valerie Fund helps keep my family informed of what’s going on with me. The Valerie Fund helps a lot of families so they also need a lot of support to do that.” Albert, diagnosed with sickle cell disease at age 2 weeks

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