FRIENDS OF ESSENTIAL THROMBOCYTHEMIA INC

Help us find a CURE!

aka Friends of ET Research   |   West Palm Beach, FL   |  www.fofETr.org

Mission

To raise funds for Essential Thrombocythemia, (ET), a rare bone marrow disease. Because this is an orphan disease, there has been little attention paid to ET within the scientific community. Our goal is to raise as much money as we can to support vital research. We provide funds to various medical research institutions who study this disorder. We hope to one day find a cure. Funds raised also contribute to the other Myelo-Proliferative Neoplasms (MPNs) such as Polycythemia Vera (PV) and Myelofibrosis (MF).

Notes from the nonprofit

Finding the cure for ALL MPNs is critical. These diseases can progress into forms that will kill the patient. That is why we have been raising money ro these rare orphan cancers since the year 2000.

Ruling year info

2001

Founder/President

Ms. Celia Miltz

Main address

10445 Terra Lago Dr

West Palm Beach, FL 33412 USA

Show more contact info

EIN

06-1608492

NTEE code info

Cancer (G30)

Specifically Named Diseases (G80)

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Essential Thrombocythemia (ET) is a myelo-proliferative (MPN) bone marrow cancer with no known cure. It is quite rare, which classifies it as an "orphan" disease, meaning the scientific community pays it little attention. We raise funds for scientific research into ET with the hope of one day finding better treatments, and/or a cure.

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?

MPN Research Foundation

We conduct an annual or semi-annual mail campaign(s) to raise much needed funds.

Population(s) Served
Adults
Children and youth

Where we work

Awards

MPN Hero 2018

CURE/Incyte

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, Adults

Related Program

MPN Research Foundation

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We are helping fund the MPN Interferon Initiative, which aims to understand why/how Interferon works. It is the only treatment available that has the potential to place a person into remission.

Number of grants and research funding awarded to the institution

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

Children and youth, Adults

Related Program

MPN Research Foundation

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

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.

Our focus is on providing funds to conduct research at various scientific institutions to advance the knowledge regarding Essential Thrombocythemia. With increased knowledge, we will be able to find a cure for this blood cancer disease.

To conduct semi-annual fund raising campaigns via mail, as well as on social media platforms.

We are able to receive much needed funds by raising awareness among the public about Essential Thrombocythemia (ET) and encouraging patients, friends, and family members to contribute to fund raising efforts.

Since our inception, we have raised over $788,000 for research into Essential Thrombocythemia, and its sister disorders. We have been partially responsible for the discovery of a genetic mutation (JAK2) which translated to a new drug treatment known as Jakafi.

Our next goal is to learn why the drug interferon, or Pegasys, works for some patients and not others, as well as determine HOW it works. With that information, scientists may be able to craft a newer and more effective drug that will be effective but with less side affects for the patient.

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 serve people who are ill with a myeloma-proliferative disease, such as Essential Thrombocythemia.

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

    Electronic surveys (by email, tablet, etc.), Suggestion box/email,

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

    To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    Our board,

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

    We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We don’t have the right technology to collect and aggregate feedback efficiently,

Financials

FRIENDS OF ESSENTIAL THROMBOCYTHEMIA 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

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FRIENDS OF ESSENTIAL THROMBOCYTHEMIA INC

Board of directors
as of 4/21/2021
SOURCE: Self-reported by organization
Board chair

Ms. Celia Miltz

No Affiliation

Term: 1999 - 2030

Donald Miltz

No Affiliation

Frederick Roy

No Affiliation

Celia Miltz

No Affiliation

Stephanie Cindric

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 04/21/2021

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
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 04/21/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • 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.