Jacobs Heart Childrens Cancer Support Services

No child should ever have cancer. Until there's a cure, Jacob's Heart is here.

aka Jacob's Heart Children's Cancer Association   |   Watsonville, CA   |  www.jacobsheart.org

Mission

Jacob's Heart Children's Cancer Support Services exists to improve the quality of life for children with cancer and other life-threatening illnesses by supporting their families in the challenges they face. We provide family-centered care that addresses the emotional, practical and financial struggles for families of children and teens during treatment, families experiencing anticipatory grief and those who are bereaved.

We envision a community where every child with a serious or life-threatening condition has a strong, supported and informed family empowered to fully participate in their care. We strive to inspire compassionate action within local communities to create a safety net of support for the unique needs of each child and family.

Ruling year info

1998

Founder and Executive Director

Lori Butterworth

Main address

680 W. Beach St.

Watsonville, CA 95076 USA

Show more contact info

EIN

68-0413822

NTEE code info

Cancer (G30)

Counseling Support Groups (F60)

Patient Services - Entertainment, Recreation (E86)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2019, 2018 and 2018.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Imagine hearing the words, “Your child has cancer.” The emotional impact is staggering. They tell you that treatment may last for years. Financial worries multiply. You lose plans for your future and the dream of a healthy child. You can't comprehend what the doctors are saying. You contemplate how to get through each passing day, worrying about your other children. Now imagine that, in the midst of treatment for cancer, you, your family and your seriously ill child develop COVID. Where do you turn? For the past 23 years, Jacob’s Heart Children’s Cancer Support Services has been addressing the financial, emotional and existential challenges faced by families enduring the unimaginable, honoring the words of Jacob’s mother, “You can handle anything if you don’t have to handle it alone.”

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?

Family Support Services

 Counseling & Support Groups: For parents, teens, siblings, couples, & bereaved families
 In Home & Hospital Visits: Providing care where and when it is needed most
 Resource Library & Referrals: Providing materials for parents on how to contribute to the care of their child and connection to additional community resources
 Community Education: Raising cancer awareness and inspiring support for our programs through venues such as health fairs, classroom visits, and community events
 Art from the Heart: Giving families a creative outlet for self-expression through art therapy and access to enriching activities in our community
 Celebrations & Milestones: Honoring the important days in the lives of special children such as birthdays and completion of treatment
 Financial Assistance: Assistance with household bills, memorial/funerals, prepaid phone, gas and grocery cards

Population(s) Served
People with diseases and illnesses

The Counseling and Case Management Program provides a complete assessment of family needs and assistance in locating resources to meet those needs. Taking special care to work with other community agencies to connect them with additional services, such as in-home medical care and transportation services.

Working with each family member to address his or her individual needs, the Jacob’s Heart team is present to celebrate successful treatment, as well as to celebrate, honor, and mourn the children whose lives are lost to cancer. Jacob’s Heart is there at diagnosis, during treatment, and beyond, with the goal of continuing to maintain quality of life, no matter what a family’s circumstances. All services are provided at no cost and are available in Spanish and English.

Population(s) Served
Families
Non-adult children

By referral and assessment of financial need, families in Santa Cruz, Monterey and San Benito Counties of California are eligible for:
• Gas or groceries gift cards ($25 per month per family $20,000)
• Bi-weekly grocery deliveries (Watsonville and Salinas – in treatment) ($25 per month per family $20,000)
• Help with bills or expenses as they relate to the child’s cancer treatment (cap = $400 per year per family in treatment) ($26,000)
• Financial support for funerals or memorials (cap $500 per family)

Population(s) Served
Families
Non-adult children

• Art from the Heart – Jacob’s Heart hosts 2 Art from the Heart sessions for families the third Saturday of each month (1 in Watsonville and 1 in Salinas). The program uses a variety of art forms to facilitate expression and connections including drawing, dance, acting, sculpture and sand play. The theme for 2014 is “Courage” with the culmination of 2 “Walls of Courage” Murals to be completed by September 2014.
• Support Groups – monthly parent support groups, quarterly teen groups and sibling activities throughout the year.
• Parent Navigator – Jacob’s Heart selects, trains and supports a team of parents who have been through the cancer journey to guide newly diagnosed families through treatment, remission or bereavement. Families are matched with similar diagnoses, cultural needs, family dynamics, etc.
• Celebrations and Milestones
o Kids Cards
o Family outings

Population(s) Served
Families
Non-adult children

Jacob’s Heart collaborates with Hospice of Santa Cruz to provide individual and group bereavement support.
• National Children’s Memorial Day (Second Sunday of December)
• 8 week loss of child sessions
• Memorials – see financial support

Population(s) Served
Families
Non-adult children

In 1999, Jacob’s Heart led the initiative to declare September “Childhood Cancer Awareness Month” in the State of California. Since then Jacob’s Heart has worked tirelessly to raise awareness within our communities through outreach, gold ribbons, materials, media relations, and special events. By forming partnerships with schools, groups and organizations, Jacob’s Heart also provides information about the impact of pediatric cancer upon children and families and reminds the community about the truth about cancer.

Population(s) Served
Adults

Jacob's Heart provides safe and reliable transportation to and from medical treatment and pre-paid gas cards to children with cancer who come from low-income families. We are committed to the standard that no child should ever miss a critical medical appointment because of lack of transportation.

Population(s) Served
Families
Non-adult children

Where we work

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 families who report that service and support staff/providers are available and capable of meeting family needs

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults, Families

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Surveys of families receiving services on a five-point scale. 4.5/5

Number of youth and families for whom a cultural inventory (e.g., cultural/ethnic identity, language, values, spiritual life, family traditions, gender and sexual identity issues, other relevant preferences, etc.) is completed and used to develop the treatment and support plan

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults, Parents

Related Program

Family Support Services

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

A family care plan is developed for each family, which includes a comprehensive assessment of needs from basic survival, spiritual, psychosocial, emotional, cultural etc.

Number of youth and families provided with objective quality assurance and performance data about providers to inform choice

This metric is no longer tracked.
Totals By Year
Population(s) Served

Parents

Related Program

Family Counseling

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Parents of children with cancer and other serious illnesses are able to make informed choices and understand treatment options.

Number of youth and families for whom the treatment and support plan is implemented as specified by the therapist

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Adolescents, Parents

Related Program

Family Counseling

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Family counseling services by Psychologist and/or caseworkers. Family members of child with cancer or other serious illness demonstrate improved coping skills.

Number of timely caseworker visits

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Adolescents, Parents

Related Program

Heart to Heart Family Programs

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Home and hospital visits by caseworkers, trained volunteers, family support specialists and therapists.

Estimated dollar value of food donations distributed to community feedings programs

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families

Related Program

Financial Support for Families of Children with Cancer

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Nutritious groceries delivered to the homes of children with cancer and other serious illnesses.

Total number of counseling sessions performed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Family relationships, Ethnic and racial groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Clinical counseling and family coaching by counselors who specialize in the trauma and grief associated with childhood illness and death.

Number of low-income households who have received utilities assistance to keep the lights, heat and/or water on in their homes

This metric is no longer tracked.
Totals By Year
Population(s) Served

Ethnic and racial groups, Health

Related Program

Financial Support for Families of Children with Cancer

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2020, we distributed $255,291 in financial and practical assistance to low-income families caring for a seriously ill or dying child.

Number of clients receiving the grocery shopping services

This metric is no longer tracked.
Totals By Year
Population(s) Served

Ethnic and racial groups, Social and economic status, Health, Work status and occupations

Related Program

Family Support Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2020, we delivered 4,920 bags of nutritious groceries to the doorsteps of families caring for a seriously ill or dying child.

Number of youth with special health care needs receiving pediatric-to-adult health care transition planning

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups, Health, Social and economic status

Related Program

Family Support Services

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Children with cancer and other life-threatening illnesses receive comprehensive support via an individualized plan of care from diagnosis, throughout the course of treatment and beyond.

Number of children who have access to healthcare

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups, Health

Related Program

Family Support Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2020, we provided 504 door to door rides to treatment for low-income children to medical care.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Each and every caring and compassionate person in our community appreciates the physical and emotional devastation that occurs when a child is diagnosed with cancer. What most caring and compassionate people don’t know about pediatric cancer is an estimated one-third of families of children with cancer have unmet basic needs during treatment.

Within the first six months of diagnosis, there are a cascading set of events that can trigger a financial crisis. A typical trajectory for a family includes:
● As parents transition into their new roles as caregivers, any available family leave benefits for working parents are exhausted within a very short amount of time. The family then experiences a loss in income due to reduced hours or taking unpaid leave. It’s estimated that up to 94% of pediatric cancer families will experience some degree of income loss due to work interruption, and in 30-50% of families, one parent will quit or lose their job as a result of needing time off to care for their child during treatment (Keleda et al., 2020).
● The role of a primary caregiver for a child with cancer is complex and very time consuming and has the tendency to exhaust all available resources. As parents struggle with the day-to-day logistics and complexities of treatment, they experience the inability to perform basic domestic or parenting duties for other siblings. As a result, expenses associated with childcare and meeting the needs of the siblings increase.
● During treatment, the child spends extended periods of time at the hospital and/or travelling frequently between home and hospital. As a result, expenses associated with travel, food, and lodging significantly increase. Families also face co-payments and other out-of-pocket/uncovered expenses during treatment.
● The financial burdens of treatment are experienced by all families, regardless of socioeconomic status. There are additional economic risk factors associated with higher degrees of financial vulnerability: families who were low-income prior to diagnosis, families with lower-levels of education, single-parent households, and families with additional siblings are at a much higher risk of experiencing a significant financial crisis following diagnosis.

Jacob’s Heart provides services in alignment with Maslow’s Hierarchy of Human Needs (1943), which asserts that a human’s needs exist in an order of significance; basic needs must be met before the individual can give their attention to the higher needs. Our programs address the basic needs for families of children with cancer, while building toward hope and healing, even when there is no cure.

Physiological Needs: When basic needs are not met, fears can dominate living. Until such fears are addressed and relieved, no progress can be made toward improved quality of life. Supporting parents of seriously ill children by addressing their practical needs is transformative: it relieves a significant source of outside stress, and it allows families to focus their time and resources on their child’s treatment and on the well-being of the siblings.
Practical and Financial Assistance: Direct payment of bills such as rent, phone, utilities, fuel and groceries (for families in treatment, or up to six months post-treatment or following the death of a child). Financial assistance for funeral or other expenses when a child dies.
Full Hearts: Weekly home deliveries of nutritious groceries, recipes and cooking instructions. Transportation: a) bicultural coordination to arrange transportation to medical treatment; b) pre-paid gas cards; c) door to door transportation to Palo Alto and San Francisco for treatment; d) counseling, support, interpretation and shared experience on the journey.
Safety and Security: At the moment of diagnosis, the sense of safety and security is immediately taken away from a family. The services at Jacob’s Heart are designed to give some measure of that back. With 23 years of experience, our compassionate and supportive staff provide a plan of care that is individualized to the unique needs of each family. The services that address this level of support include evidence-based practices; case management; home and hospital visits; a strong, reliable and experienced organization; and trusting relationships with trained, caring and responsive staff and compassionate volunteers.
Love and Belonging: Every family at Jacob’s Heart is part of our family of families. Peer mentorship is woven throughout our programs, providing families with opportunities to talk freely with others who “just know,” about issues they, too, have likely faced. Families gather at Jacob’s Heart to support one another, to celebrate milestones, and perhaps most importantly, to have fun. The services that address this level of support: Two family camps: Camp Heart for families of children in treatment and Forever Loved, for families bereaved by the loss of a child.
Emotional Well-Being: Social and emotional well-being starts with feeling safe, secure and valued. Our emotional well-being programs build on that foundation through individual, family and group counseling including psychotherapy, coaching, and expressive therapies.

Jacob's Heart provides support to families of children with life-threatening illnesses in both the hospital and home settings. We classify our service delivery based on a family's unique socioeconomic needs, location of care (hospital or home) and the stage of a child's medical condition: 1) Curative trajectory: cancer diagnosis has likelihood of remission and child stays on protocol; 2) Anticipatory Grief: diagnosis or complications increase likelihood of death; and 3) Bereavement: loss of minor child to cancer or other diseases/circumstances.

Through relationships built over many years with Packard Children's Hospital at Stanford and UCSF Medical Center, Jacob's Heart works with hospital staff to facilitate services between home and hospital creating a comforting presence in the hospital when a child is unable to be at home. During the child's extended hospitalizations, we are also able to support siblings and other family members who remain at home.

Jacob's Heart's direct family services are bilingual/bicultural and are in alignment with the principles of pediatric palliative care; they are designed to alleviate the emotional, spiritual, psychosocial, and practical pain experienced by families facing the potential death or death of their child.
Each year, Jacob’s Heart conducts a comprehensive community awareness campaign, which includes proclamations and presentations to local and regional governing bodies with wording recognizing Jacob’s Heart and Lucile Packard Children’s Hospital at Stanford.
In 2001, our founder, Lori Butterworth, was awarded the prestigious “Use Your Life Award” from Oprah Winfrey’s Angel Network, representing Jacob’s Heart in three appearances on the Oprah Winfrey Show. Jacob’s Heart has received numerous local awards including, but not limited to, the 2010 Monterey Peninsula Chamber of Commerce’s Business Excellence Award for Nonprofits; the KSBW/Union Bank 2010 Salute to Small Business Nonprofit Business of the Year; and the Pajaro Valley Chamber of Commerce 2002 and 2010 Organization of the Year. Our recent awards include “Best Nonprofit” from the Register Pajaronian, “Organization of the Year” from the Pajaro Valley Health Trust, and “Best Nonprofit” from the GoodTimes. Our Kidrageous Carnival won “Event of the Year” for the Pajaro Valley. Our founder was named 2019 Woman of the Year by the Pajaro Valley Chamber of Commerce, Jacob’s Heart was awarded Organization of the Year, 2020 for the Aptos Chamber of Commerce, and Teen Support Specialist and former Jacob’s Heart Teen, was honored for the Spirit of the Community from the Salinas Chamber of Commerce in 2021.

Jacob’s Heart has been certified by the Points of Light Foundation as a “Service Enterprise Center” in recognition for the organization’s ability to fundamentally leverage volunteers and their skills. According to the Service Enterprise diagnostic, the value of Jacob’s Heart’s donated goods and volunteer services in 2020 was $171,414 donated goods services supplement and sometimes exceed actual expenditures. Thus, every dollar donated to Jacob’s Heart yields twice the impact in direct services to families.
In 2020 alone, Jacob’s Heart provided essential, daily support for 325 seriously ill children and 1,189 of their family members. Here is a snapshot of what we provided in 2020:
● 11,363 hours of counseling, coaching and care management to families of children in treatment for cancer and other life-threatening illnesses (2019: 6,234 hours)
● 1,875 hours of emotional support to families bereaved by child loss (2019: 1,075 hours)
● $255,291 in direct financial assistance for rent, utilities, food, meals, fuel and funeral expenses (2019: $192,305)
● 4,920 bags of groceries were delivered by compassionate volunteers to families’ doorsteps (2019: 2,872 bags)
● 447 care packages with personalized gifts and essentials including items such as diapers, hand sanitizer, clothing, toys and household items (2019: 401)
● 504 door-to-door rides so children were able to get to treatment with comfort, companionship, and safety (2019: 536) down slightly due to COVID; our transportation program has since been upgraded with additional safety measures
● 258 home and hospital visits to help parents make informed decisions for their children
● 4,206 cards, gifts and remembrances to honor milestones, birthdays and anniversaries
● Personalized gifts and celebrations valued at $72,333 which alleviated stress and delivered joy to 403 family members through Holiday Hearts Adopt-a-Family.

The long-term goal at Jacob’s Heart is the opposite of most organizations: We look forward to a day when our services are no longer needed, and we are able to close our doors - a day when there is no more childhood cancer. Unfortunately, every year for the past 23 years, the need for Jacob’s Heart has grown. With no government funding and no reimbursement for services, every year, we rely on those who care. Our programs are not sustainable unless someone cares.

Financials

Jacobs Heart Childrens Cancer Support Services
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Jacobs Heart Childrens Cancer Support Services

Board of directors
as of 4/2/2021
SOURCE: Self-reported by organization
Board chair

Gail Delorey, CPA

Bianchi, Kasavagn and Pope

Term: 2018 - 2021

Maureen Tabari

Attorney at Law

Lee May

Impress Digital Media

Geoffrey Perusse

Attorney at Law

Nanci Dobbins

Trustee

Scott Roseman

New Leaf Community Markets

Melissa Burke

Stanford Children's Health

Dr. John Mark

Stanford Children's Health

Dr. Harvey Cohen

Stanford Children's Health

Dr. Barbara Sourkes

Stanford Children's Health

Megan Martinelli

S. Martinelli & Company

Linda Rossi

Trustee

Aimee Grijalva

Trustee

Mariza Loyola

Trustee

Walmer Medina

Project Designer

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

Organizational demographics

SOURCE: Self-reported; last updated 09/02/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data