Cristian Rivera Foundation
"Full Steam Ahead"
Mission
The Cristian Rivera Foundation is a non-profit organization that is committed to finding a cure for Diffuse Intrinsic Pontine Glioma (DIPG). Our foundation strives to increase public awareness of DIPG, as well as raise funds that will provide financial support to families and medical facilities that conduct innovative research and clinical trials. Through its many efforts, the Cristian Rivera Foundation has helped build the foundation that supports the groundbreaking research that will one-day cure DIPG. The Cristian Rivera Foundation funds the work of Dr. Mark Souweidane, Director of Pediatric Neurosurgery of Weill Cornell Medical Center Memorial Sloane (Kettering) Cancer Center and Dr. Oren Becher the director of Pediatric Hematology-Oncology at Mount Sinai Kravis Childrens Hospital.
Notes from the nonprofit
The Cristian Rivera Foundation, a New Jersey-based 501(c)(3) not-for-profit organization, in 2009. Our goal is to create a world without DIPG by funding research towards a cure, spreading awareness and providing family support. Today, three children have responded well to the clinical trials conducted by Dr. Mark Souweidane at Weill Cornell Medical Center which we fund. These three children are providing hope and promise to the medical community and to children and families impacted by DIPG. We also focus our funding towards genetic research conducted by Dr. Oren Becher at Pediatric Hematology-Oncology at Mount Sinai Kravis Children’s Hospital. We strive to reach our mission through fundraising events, monthly newsletters, media outreach and other methods designed to educate and enlighten those in the community who are not aware of DIPG. Our foundation has also become a source of support, information, and financial assistance to families affected by DIPG.
Ruling year
2009
Founder
John Rivera
Main address
1452 River Rd
Edgewater, NJ 07020 USA
EIN
90-0499789
NTEE code
Fund Raising and/or Fund Distribution (H12)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
The Cristian Rivera Foundation is a non-profit, 501 (c) (3) organization, which works tirelessly to create awareness, and to raise funds to support families affected by Diffuse Intrinsic Pontine Glioma (DIPG), the Cristian Rivera Foundation also allocates funds towards the research and clinical trials conducted by Dr. Mark Souweidane of Weill Cornell Medical Center and Dr. Oren Becher of Mount Sinai Kravis Children’s Hospital. Dr. Mark Souweidane and Dr. Oren Becher are both conducting promising new clinical trials that have shown promising results, towards a cure for DIPG.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Funding the CED research and trial conducted by Dr. Mark Souwedaine at Weill Cornell Medical Center
Dr. Souweidane’s research is focused on enhancing drug delivery to the brain and brain tumors of children. Specifically, the Souweidane laboratory is testing a form of direct delivery called convection-enhanced delivery (CED) towards the treatment of DIPG. This work translated into a Phase I clinical trial, “Convection-Enhanced Delivery of 124I-8H9 for Patients With Non-Progressive Diffuse Pontine Gliomas Previously Treated With External Beam Radiation Therapy” (P.I.: M.M. Souweidane, NCT01502917). The trial began enrolling patients in May of 2012 at Memorial Sloan Kettering Cancer Center and remains open for patient accrual. Through the Pediatric Brain Cancer Tumor Consortium (PBTC), it is expected that this innovative clinical trial will be offered across North America in the forthcoming year. This new approach represents a ray of hope for families facing the diagnosis of DIPG. Dr. Souweidane is the co-director the Weill Cornell Children’s Brain Tumor Project (CBTP) and a member of the Meyer Cancer Center at Weill Cornell Medicine. Dr. Souweidane chairs the neurosurgery committee and is on the steering committee of the Children’s Oncology Group (COG). This year he was named to the NCI’s Brain Malignancy Steering Committee. As of November 2017, 33 children have been treated on the CED trial.
Funding the Tumor Tissue research by Dr. Oren Becher at Mount Sinai Kravis Children’s Hospital
Dr. Oren J. Becher is a pediatric neuro-oncologist who has dedicated his career to improving therapies for children with brain and spinal cord tumors with a particular focus on identifying effective therapies for children with DIPG. He is both a physician and a scientist, spending time caring for children with cancer and leading a research laboratory. He has received numerous prestigious awards.
Dr. Oren Becher has made several important discoveries, including the development of the first genetically engineered mouse model for DIPG. While at MSKCC, he also initiated two clinical trials for children with recurrent solid tumors. Afterward, Dr. Becher focused on identifying promising therapies to translate into clinical trials for children with DIPG at the Ann & Robert H. Lurie Children's Hospital. He is currently the Chief of Pediatric Hematology-Oncology at Mount Sinai Kravis Children’s Hospital.
Dream Come True Trip
Every year, the Cristian Rivera Foundation pays all the expenses for one family to go away on vacation. Our foundation makes this gesture in order to uplift the families affected by DIPG. A parent’s world shatters when they first find out their child is diagnosed with DIPG. This vacation helps the whole family take a mental relaxation from reality and enjoy quality time. In the past, we’ve sent families to Puerto Rico and also to Los Angeles, where a DIPG Angel got to meet his favorite Power Ranger.
Where we work
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
How Many Children Treated on the Trial we fund to date
This metric is no longer tracked.Totals By Year
Related Program
Funding the CED research and trial conducted by Dr. Mark Souwedaine at Weill Cornell Medical Center
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Goals & Strategy
Reports and documents
Download strategic planLearn 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?
The mission of the Cristian Rivera Foundation is to create awareness, fund groundbreaking research, and trials, and economically support families impacted by DIPG. Our organization also serves as a source of information and guidance to those families with are just learning about DIPG.
DIPG is a Rare, Inoperable Brain Stem Tumor that predominantly affects children between the ages of 2 and 10. Only 200-300 cases are discovered in the United States each year and because there is no cure, it's young victims only have an average of 3-18 months to live, after they've been diagnosed. Therefore, by creating awareness and funding ground break research and trials, one day we may find a cure for this disease.
What are the organization's key strategies for making this happen?
To achieve this mission:
1. The Cristian Rivera Foundation raises awareness by going to events to inform our community about DIPG, having a strong social media presence, writing informative newsletters every month, and getting featured on global news and media platforms. Our foundation has a very strong presence in the North East and our work is spreading rapidly throughout the country. We also receive inquiries from families overseas.
2. The Cristian Rivera Foundation funds research and trials conducted by Dr. Mark Souweidane and Dr. Oren Becher, supports families impacted by DIPG, and creates awareness for DIPG through various marketing campaigns. The Cristian Rivera Foundation produces events throughout the year and donates the funds raised.
What are the organization's capabilities for doing this?
At the Cristian Rivera Foundation, we have phenomenal Board Members, friends, and volunteers that have helped our foundation raise awareness and funds. Many of our members are high-profile entertainment/ media personnel, which help our foundation reach out to the masses and raise awareness globally. Our founder, John Gungie Rivera, is a well-known & respected marketer and entrepreneur; he has parlayed his knowledge and experience to the DIPG community to help raise awareness for DIPG research.
What have they accomplished so far and what's next?
Our most significant accomplishment is that we have donated almost 2 million dollars to family support, awareness campaigns, and the research and clinical trials of Dr. Souweidane and Dr. Becher. Thus far, the clinical trials we've funded have treated over 40 children. Each year this number grows at a rapid rate. We aim to treat 10% more children each year and increase the progress. We will not relent until we eradicate DIPG. Our foundation will not stop raising awareness and funds until that goal is achieved.
Financials
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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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Cristian Rivera Foundation
Board of directorsas of 03/08/2024
John Rivera
Melinda Colon Cox
Rena Kliot
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? 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
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:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data
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