Daniela Conte Foundation Inc
Programs and results
What we aim to solve
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
What are the organization's current programs, how do they measure success, and who do the programs serve?
Daniela's Butterfly Box™ Program
Daniela's Butterfly Box™ are boxes that bring a smile and joy to children with cancer. These boxes help children feel like kids again while undergoing treatment. We also provide a personal postcard letting the child know that they are not alone in their cancer journey.
We provide these boxes to children’s hospital or mail them to the child's home so that social workers and child life specialists can provide it to a child when they just need a smile.
In-Treatment Support Program
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
Memorial Support Program
For families faced with the exceptional burden and cost of laying their child to rest. DCF offers financial grants to pay for funeral and/or burial expenses for their child.
Where we work
External reviews
Videos
Our results
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
Holding steady
Context Notes
Funded a research grant at Cold Spring Harbor Laboratory to study Rhabdomyosarcoma research in 2021 only.
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 180 families with children in active treatment as well as memorial assistance whose children have lost their battle to cancer in 2023. (A 20% increase from 2022).
Number of children served
This metric is no longer tracked.Totals By Year
Population(s) Served
Children and youth, People with diseases and illnesses
Related Program
Daniela's Butterfly Box™ Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Since 2020 we have delivered over 200 of Daniela's Butterfly Boxes to children in active treatment for cancer and their siblings.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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:
• Provide comprehensive support services for children and families
• Educate our community to raise awareness about childhood cancer
• Advance cancer research and treatment
The mission of the Daniela Conte Foundation is committed to providing financial assistance to families of children with cancer, raising awareness for pediatric cancer, and helping to find a cure by funding Rhabdomyosarcoma research. 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.
What are the organization's key strategies for making this happen?
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 butterfly boxes for children in active treatment and to their siblings. Butterfly boxes are special surprises that are delivered to a child undergoing treatment, while at home, or in a clinic to comfort them and bring a smileand joy 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 childhood cancer and engages many citizens in helping to save local lives.
What are the organization's capabilities for doing this?
The Daniela Conte Foundation was established in 2020 through Daniela's parents to financial support families going through the same cancer journey they once traveled, raise awareness and fund research 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 treatments 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.
What have they accomplished so far and what's next?
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 give 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 childhood cancer.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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
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Connect with nonprofit leaders
SubscribeBuild 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.
Daniela Conte Foundation Inc
Board of directorsas of 02/18/2024
Katia & Anthony Conte
Daniela Conte Foundation Inc
Term: 2021 - 2021
Maria Galofaro
Vickie Morici
Amanda Lee
Kerri Jennings
Lisa Amatulli
Tony Conte
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 07/26/2021GuideStar 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
- 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.
- 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.