Dana's Angels Research Trust

Aiming to Cure NPC

aka DART   |   Greenwich, CT   |  www.danasangels.org

Mission

Furthering medical research, medical education, or medical or hospital care for the treatment or cure of Niemann-Pick Type C disease or similar genetic diseases.

Notes from the nonprofit

Dana's Angels Research Trust is a non-profit organization that funds research into a rare disease, Niemann-Pick type C (NPC), a fatal, cholesterol storage disease affecting children. Two of the Marella's four children, Dana and Andrew, were afflicted by NPC. Most children who suffer from NPC die in their early teens, but DART has helped change that fate. As an all-volunteer organization, over 95% of the funds expended are channeled directly into supporting pivotal NPC research; research that may also help millions of people suffering from HIV/Aids, heart disease, stroke, Alzheimer's and other disorders that appear to be related to cholesterol. Sadly, Dana, the Marella's daughter, at 19 years of age, passed away in the Summer of 2013. When Dana died, she was confined to a wheelchair, no longer talked, suffered from frequent pneumonia and required constant care, but she always had a smile on her face and was an inspiration to many, both here and around the world. The Marella's youngest child, Andrew is relatively stable right now, although with the passing of his sister, Andrew started having seizures. Andrew has benefited from two experimental medications and recently started in the latest drug trial at the NIH; all due in large part to DART's efforts.

Ruling year info

2003

Trustee

Mr. Philip Marella

Trustee

Mrs. Andrea Marella

Main address

15 E. Putnam Ave., #117

Greenwich, CT 06830 USA

Show more contact info

EIN

51-6528048

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Birth Defects, Genetic Diseases Research (H20)

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

SOURCE: Self-reported by organization

Funding research into a rare, orphan disease afflicting mostly children called Niemann-Pick type C.

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?

Fundraising

DART holds periodic fundraisers in Fairfield County, CT and then works with the Hide and Seek Foundation, Race For Adam Foundation, Ara Parseghian Medical Research Foundation and the National Niemann-Pick Disease Foundation to identify the best scientific research projects in hopes of finding a cure for Niemann-Pick disease Type C.

Population(s) Served
People with diseases and illnesses

In 2008, several NPC research foundations and NPC researchers from different backgrounds came together with the common goal of developing effective therapies for NPC disease and to initiate a clinical trial within a 3-5 year time frame. This became the founding principle of Support Of Accelerated Research for NPC (SOAR). The Collaborative, which is funded through NPC charity support, is composed of 3 internationally-recognized NPC scientists and a network of collaborators pursuing projects relevant to SOAR. SOAR has contributed to significant progress in developing a pipeline for NPC therapeutics and in the discovery of disease biomarkers to facilitate clinical testing.

Population(s) Served
People with diseases and illnesses

In addition to its commitment to SOAR-NPC, DART also funds other important basic scientific research and translational medical research into NPC disease, both directly and in collaboration with other NPC foundations.

Population(s) Served
People with diseases and illnesses

Where we work

Awards

RARE Champions of Hope – Collaborations in Science and Technology 2016

Global Genes

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Strong initial funding for medical and scientific research

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

Chronically ill people

Related Program

General Research

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

In 2020, with COVID protocols it was difficult to maintain research programs, but our labs did the best that they could do within restrictions.

Recruitung the most talented and experienced researchers and/or labs.

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

Chronically ill people

Related Program

General Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

DART partnered with the Ara Parseghian Medical Research Fund to fund two new programs for the development of potential therapies at Dartmouth College and and Cornell Medical College.

Volume of our pipeline and speed of progress toward milestones.

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

Chronically ill people

Related Program

General Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of companies interested in developing therapies for NP-C

Articles published in scientific or medical journals and citations to those srticles.

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

Chronically ill people

Related Program

General Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

There is a lot of robust research in NP-C that is peer reviewed and published.

Extent to which third parties invest in potential therapies from our funded research.

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

Chronically ill people

Related Program

General Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Our basic funding with our partners organizations provides the proof of concept necessary to more research forward on a larger scale.

Number of research collaborations and collaborators.

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

Chronically ill people

Related Program

General Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

DART has expanded the partners with which we fund NP-C research.

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.

Find a cure Niemann-Pick type C disease.

NPC disease is a rare, fatal genetic disorder that results in progressive decline in motor and intellectual function of affected individuals, primarily children. The NPC community has benefited from incredible research by world-class scientists funded by charities including Dana's Angels Research Trust, the Ara Parseghian Medical Research Foundation and the National Niemann-Pick Disease Foundation. The effort continues supporting pivotal NPC research; research that may also help millions of people suffering from HIV/Aids, Ebola, heart disease, stroke, Alzheimer's disease and other disorders that appear to be related to cholesterol metabolism.

DART and its SOAR collaborators are currently working with several different compounds at various stages of drug development. The drug pipeline was designed to generate maximum efficiency in moving promising drug candidates forward and to accomplish this, SOAR focuses on the following aspects:
-An open forum of discussion among SOAR scientists and affiliated labs to allow rapid identification of potential compounds to ameliorate NPC disease
-Discovery of biomarkers to provide critical tools for clinical drug evaluation
-Maintenance of several unique NPC animal models utilized for in vivo testing of compounds
-Complementary expertise among individual laboratories to provide a foundation for thorough analysis and evaluation of drugs of interest
-Actively seek out highly meritorious projects and additional collaborations aligned with the priorities of SOAR and aid in funding these pilot projects.

Central to DART's SOAR collaborative is a core of scientists from four internationally recognized NPC laboratories:
-Dr. Forbes Porter, NICHD/NIH
-Dr. Cristin Davidson, NHGRI/NIH
-Dr. Andrew Lieberman, University of Michigan
-Dr. Mark Schultz, University of Michigan
-Dr. Stephanie Cologna, University of Illinois, Chicago
-Dr. Charles Vite, University of Pennsylvania

These scientists maintain a close working relationship and function as a tightly integrated unit to allow for free scientific exchange. They work closely with an extensive network of scientific collaborators, including other intramural investigators at the National Institutes of Health [Therapies for Rare and Neglected Diseases (TRND), National Center for Advancing Translational Sciences (NCATS), and The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)], other academic institutions, and pharmaceutical companies.

While great progress has been made, the NPC community has yet to see its first FDA approved therapy. We are hopeful that Adrabetadex/cyclodextrin or Arimoclomol, each of which concluded FDA approved Phase 2/3 clinical trials in 2019 will be the first step in the creation of a drug cocktail that will work as a cure for NPC. Numerous additional therapies including gene therapy, are in our pipeline awaiting an opportunity to be tested clinically.

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?

    We are regularly engaged with clinicians, researchers and other patient organizations about how we can better accelerate our mission.

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

    Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

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

    To identify and remedy poor client service experiences, 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,

  • What significant change resulted from feedback?

    We reorganized our collaborative research approach and team.

  • With whom is the organization sharing feedback?

    The people we serve, Our board, Our funders, Our community partners,

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

    We reorganized our collaborative research approach and team.

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

    We collect feedback from the people we serve at least annually, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

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

Financials

Dana's Angels Research Trust
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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

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Dana's Angels Research Trust

Board of directors
as of 1/3/2022
SOURCE: Self-reported by organization
Board co-chair

Mr. Philip Marella


Board co-chair

Ms. Andrea Marella

Norman Bryn

Maria Kessel

Christina Krauss

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 02/04/2021

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
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

No data

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 02/04/2021

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • 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.