PLATINUM2023

CURE CF

Curing CF one party at a time

Louisville, KY   |  www.curecfinc.com

Mission

Cure CF, Inc.'s mission is to facilitate better treatments for the medical condition known as Cystic Fibrosis and to find a cure for Cystic Fibrosis.

Ruling year info

2015

Principal Officer

Joseph Klausing

Main address

401 S 4th St Ste 2200

Louisville, KY 40202 USA

Show more contact info

EIN

47-4095779

NTEE code info

Birth Defects (G20)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The problem we are addressing is the lack of clinical trial access for cystic fibrosis patients in Louisville.

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?

Cystic Fibrosis and Respiratory Center of Kentuckiana

In an effort to boost care for children in our region with cystic fibrosis (CF), Cure CF Inc. has announced a gift of $300,000 to Norton Children’s Hospital through the Children’s Hospital Foundation. The funding will bring additional clinical research trials to Norton Children’s Hospital in collaboration with specialists from University of Louisville Physicians/UofL Pediatrics and support additional specialists, including a specialized nutritionist and pharmacist to address the special needs of CF patients.

“Cure CF is cognizant of the need to better the care of CF patients and families in Kentuckiana,” said Joseph Klausing, executive director, Cure CF. “We are hopeful that the cure for CF will be found through our pledge, as access to state-of-the-art research, clinicians and clinical trials will now be available to our local patients.”

“Cure CF is setting the stage for a long-term vision of the care we can provide to children with cystic fibrosis and other respiratory issues,” said Lynnie Meyer, Ed.D., R.N., CFRE, chief development officer, Norton Healthcare. “This truly is a foundational gift, and Cure CF is showing great leadership in recognizing some of the issues our children face.”

The Children’s Hospital Foundation has committed an additional $400,000 in support of this project, bringing the total amount for CF support to $700,000.

The gift is part of a long-term vision for the hospital and the University of Louisville to create a more comprehensive program to treat CF and respiratory issues, including establishing a dedicated center, adding respiratory care specialists and expanding research programs.

Population(s) Served
Children and youth
People with diseases and illnesses

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 youth with special health care needs receiving pediatric-to-adult health care transition planning

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

Children and youth, Young adults, People with physical disabilities, People with psychosocial disabilities, Chronically ill people

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

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 goal is to find a cure for cystic fibrosis through funding research and providing access to clinical trial in Louisville.

We have outlined three goals for 2023:

1. Grow our online presence;
2. Streamline our events and
3. Get 25 new families involved with Cure CF

We are very capable of meeting these goals this year. We have partnered with one of the largest residential developments ion Louisville for a fundraising concert in June. Finally, we have created a pamphlet to inform and educate CF families about Cure CF.

We have partnered with one of the largest residential developments ion Louisville for a fundraising concert in June. Finally, we have created a pamphlet to inform and educate CF families about Cure CF.

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.
  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve

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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

CURE CF
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Operations

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

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lock

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.

CURE CF

Board of directors
as of 01/31/2023
SOURCE: Self-reported by organization
Board chair

Joseph Klausing

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/11/2021

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
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 02/11/2021

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 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 seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • 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.