Daniela Conte Foundation Inc

We Believe In A Cure

Mission

The Daniela Conte Foundation is committed to providing financial assistance to families of children with cancer, raising awareness for pediatric cancer, and helping find a cure by funding Rhabdomyosarcoma research. Childhood cancer research is extremely underfunded and children deserve so much more! As a team we strive to make the lives of patients and family members a little less stressful by helping support their financial needs and struggles. Our Vision is that there will be a day when no child will face the uncertainty of cancer and that successful treatments will not result in negative, long-term effects.

Notes from the nonprofit

Forty six kids are diagnosed each school day and 49 will die each week. I know because my 8-year old daughter died in her father's arms. With the support of my family, I started the Daniela Conte Foundation to fight childhood cancer full-time. The foundation now provides financial assistance to families of kids with cancer. We also fund cutting-edge childhood cancer Rhabdomyosarcoma research (the cancer that Daniela passed away from) while aggressively advocating for the kids. We need to do more!! Katia Conte President/Co-Founder

Ruling year info

2020

President & Co-Founder

Katia Conte

Chairman of the Board and Co-Founder

Anthony Conte

Main address

64 Randolph Drive

Dix Hills, NY 11746 USA

Show more contact info

EIN

85-1989818

NTEE code info

Cancer (G30)

Alliance/Advocacy Organizations (H01)

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

In 2016, Daniela Conte was diagnosed with Rhabdomyosarcoma, a rare and aggressive form of childhood cancer. During her four-year fight, Daniela received much of her care at Stonybrook Children's Hospital in Long Island, NY. Many of the clinical trials and advanced treatments she needed were not available. Because of these limitations, the foundation now aims to ensure that young patients and their families have access to the life-saving treatment they need and deserve by funding more research in to this rare disease.

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?

Daniela's Butterfly Box Program™

Our daughter Daniela showed us all how to live each day to the fullest, enjoying every moment. She told us that giving someone a hug brings happiness. Taking her lead, we have developed our Butterfly Box Program.

The Butterfly Box Program are special surprises delivered at home, the clinic, or distributed at public events to children who are currently diagnosed with and under treatments for any form of childhood cancer. Our standard Butterfly Boxes are based on Daniela's list. We provide these boxes to children’s hospital so that social workers and child life specialists can provide it to a child when they just need a smile.

Population(s) Served
Children and youth

The Daniela Conte Foundation is committed to emotionally and financially assisting families of children with cancer, so the families can focus on helping their children get well. To receive financial assistance from us, the families must meet the following criteria:

-Have a child diagnosed with cancer under the age of 18;
-Need assistance with expenses directly attributable to your child’s diagnosis;
-Assistance may be granted one time in a 12-month period/2 times overall;
-Application MUST be completely filled out by the family and the Social Worker for
it to be reviewed;
-We only pay creditors directly

Population(s) Served
Children and youth

Laying a child to rest is an experience no parent should ever have to endure. We work closely with funeral homes to provide assistance towards memorial cost for a child whose battle with cancer has ended.

Population(s) Served
Children and youth

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 research studies funded

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

Children and youth, People with diseases and illnesses

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Funded a research grant at Cold Spring Harbor Laboratory to study Rhabdomyosarcoma research

Number of families served in cancer treatment

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

Children and youth, People with diseases and illnesses

Related Program

In-Treatment Support Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Provided financial assistance to families with children in active treatment as well as memorial assistance whose children have lost their battle to cancer.

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.

Anyone facing rare cancer needs a tremendous amount of support to stay in the fight, especially children. But sadly, a critical lack of funding to research and treat these cancers and the fact that life-saving treatment is often not available locally can leave families feeling unsupported, isolated, and hopeless. The Daniela Conte Foundation is working to address the challenges these families face by mobilizing the efforts of our community’s volunteers, researchers, medical professionals, and philanthropists. We are now working with researches at Cold Spring Harbor Laboratory located in Long Island, NY to fund less toxic treatments for rare cancers specifically for Rhabdomyosarcoma.

Our foundation's motto is: “We Believe In A Cure”. Today, the foundation is working towards three objectives under this motto:

• Advance cancer research and treatment
• Educate our community to raise awareness about rare cancers
• Provide comprehensive support services for children and families

The mission of the Daniela Conte Foundation is to raise awareness, fund research to develop less toxic, more targeted treatments for rare cancers, with a specific focus on better understanding Rhabdomyosarcoma. We hope that the research being done at Cold Spring Harbor Laboratory will lead to a broader understanding of this disease and contributes to the advancement of specialized treatments.

The Daniela Conte Foundation will try to rally hundreds of community members each year to give their time and resources to advancing rare cancer treatment. The Daniela Conte Foundation hosts several special events throughout the year to advance philanthropy including our annual Butterfly 5K Run/Walk and Butterfly Gala. Hundreds of compassionate local citizens attend these events and provide their financial support to further our cause. In addition, the Daniela Conte Foundation works with local businesses who wish to host third party fundraising events.

The Daniela Conte Foundation also organizes the efforts of local individuals and service groups to help create comprehensive care and support for those facing childhood cancers. We provide hug boxes for children in active treatment and to their siblings. Hug boxes include special surprises that are delivered to a child undergoing treatments, while at home, or in a clinic to comfort them and bring a smile to children during the most difficult time of their young lives. Beyond recruiting vital financial support to advance cancer research and treatment, the Daniela Conte Foundation also partners with the New York Blood Center each year to host a blood drive in our local community, which helps to create broader awareness of rare cancers and engages many citizens in helping to save local lives.

The Daniela Conte Foundation was established in 2020 through Daniela's parents to raise awareness and research funds for Rhabdomyosarcoma, a rare and extremely aggressive childhood cancer. At the time, Daniela's parents are hopeful that their Foundation can help fund research and treatment to save other children that will be going through this disease now and in the future. Unfortunately, better treatments were not available for Daniela, but the Foundation was created in her honor that now works to ensure that other families do not have to endure the horrific loss of a child.

The Daniela Conte Foundation has donated $30,000 so far to expand the scope of research and treatment in partnership with Cold Spring Harbor Laboratory. We plan on donating more so that one day children diagnosed with this rare disease have access to the life-saving treatment they need and deserve.

The Daniela Conte Foundation works tirelessly to raise awareness and the vital funding needed to save children's lives. The unfortunate reality when it comes to rare cancers is that existing hospital programs and revenues alone could never hope to sustain the research and clinical trials it takes to advance treatment and find a cure.

The Daniela Conte Foundation offers many avenues for charitable giving and we encourage those who share our passion for helping children with rare cancer to visit www.danielacontefoundation.org to learn more about ways to get involved and give.

The Daneia Conte Foundation will try it's best to transform cancer care in the New York area and the surrounding region, bringing hope to hundreds of families.

Our next phase is to continue to gives funds to Cold Spring Harbor Laboratory and also work closely with our local hospitals to create a team of world-class medical providers to advance treatment for rare and solid tumors. To be successful at this, we will need the support of all who passionately believe in our mission and wish to make life better for children who are battling rare cancers.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The childhood cancer community

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.),

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    N/A

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    By requesting feedback on our patient's needs, we've been able to widen our service scope to best help families affected by childhood cancer. It has helped us to better serve our community.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Daniela Conte Foundation Inc

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Operations

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

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Connect with nonprofit leaders

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  • 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.

Daniela Conte Foundation Inc

Board of directors
as of 07/07/2022
SOURCE: Self-reported by organization
Board chair

Katia & Anthony Conte

Daniela Conte Foundation Inc

Term: 2020 - 2020

Maria Galofaro

Vickie Morici

Amanda Lee

Kerri Jennings

Lisa Amatulli

Jessica Conte

Tony Conte

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 7/26/2021

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, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/26/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.