PSC Partners Seeking a Cure

aka Liver and Bile Duct Disease Research and Education Foundation   |   Greenwood Village, CO   |  www.pscpartners.org

Mission

The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.

Ruling year info

2005

CEO

Ms. Ricky Safer

Executive Director

Ms. Meegan Carey

Main address

6900 E. Belleview Ave. Suite 202

Greenwood Village, CO 80111 USA

Show more contact info

EIN

20-2112635

NTEE code info

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Primary sclerosing cholangitis (PSC) is a rare, chronic and progressive bile duct disease that damages the bile ducts inside and outside the liver. With PSC, bile ducts are inflamed, and the inflammation leads to scarring and narrowing (sclerosing) of the affected ducts. Eventually, blockages may occur. As the scarring blocks more and more ducts, bile becomes trapped in the liver. This damages the liver and can result in fibrosis and cirrhosis of the liver and liver failure. There are no treatments to slow down disease progression and no cure for PSC other than liver transplantation. PSC is a rare disease that predominantly affects 30 to 40-year-old men. However, PSC also occurs in children of any age, women, and the elderly. About 43 percent do not have any symptoms when diagnosed, and diagnosis is made through a combination of blood tests and imaging. Over 75 percent of PSC patients have inflammatory bowel disease (IBD). PSC is also associated with other autoimmune diseases.

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?

Raise Funds for PSC Research

PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization that endeavors to find a cure for Primary Sclerosing Cholangitis. Today this liver disease has no specific treatment or cure. Little is known about this disease and its course is hard to predict. Patients and caregivers need support and information, which is provided by research into better treatments and a cure for PSC .

Population(s) Served
Adults

Since 2005 we have held annual patient conferences for PSC patients and caregivers at different medical centers throughout the country. These weekend conferences offer a wonderful opportunity to learn about the most recent advances in PSC treatments and research and also to share experiences, advice, and concerns with other PSCers.

Population(s) Served
Adults

PSC Partners encourages all primary sclerosing cholangitis (PSC) patients, parents or legal guardians to join the international PSC Partners Patient Registry. Because PSC is a rare disease, the Patient Registry provides an invaluable resource for researchers, because it provides a significant data source about PSC in one location. This is an urgent appeal to gather together all those afflicted by PSC so as to make PSC a visible and well-understood disease. www.pscpartnersregistry.org
The Registry consists of a simple survey including questions on PSC diagnosis, quality of life, medical history, medications, surgery, family history and demographics. The survey will take at most half an hour to complete. All information will be de-identified so that the participant information remains anonymous.
The PSC Partners Patient Registry aims to attract and facilitate PSC research and clinical trials, and to advocate for PSC patients, making it known that PSC patients are in desperate need of treatments and a cure. This Registry is different from registries connected to specific studies and from hospital registries in that this Registry is patient-reported. The patients are at the helm, and PSC Partners strives to build a collaborative community with patients, researchers, clinicians and PSC advocates in order to accelerate PSC research. The Registry is in line with PSC Partners’ growing competitive Grant Program that funds innovative PSC research. http://www.pscpartners.org/grants
The Registry was created in collaboration with the National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR) after PSC Partners was selected to participate in the ORDR global registry pilot program (GRDR) in 2012. All data is owned by PSC Partners Seeking a Cure.
Patient privacy and site security are very important to PSC Partners. The Registry is monitored by an Institutional Review Board ( Chesapeake IRB) and is managed by Patient Crossroads, selected by the NIH to manage some of its patient registries. Patient Crossroads is HIPAA and FISMA compliant and manages numerous medical, hospital and rare disease registries.
For all registry questions, please write to [email protected]
For more information on PSC Partners Seeking a Cure, a 501(c)(3) nonprofit organization, please go to www.pscpartners.org

Population(s) Served
Adults

Where we work

Accreditations

The America's Best Charities Seal of Excellence 2019

Affiliations & memberships

PSC Partners Seeking a Cure Canada 2020

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 conference attendees

This metric is no longer tracked.
Totals By Year
Related Program

Patient Conferences

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Annual conference attendees(2014-2019), Patient-Focused Drug Development Forum attendees (presentation to FDA, 2020)

Number of PSC Partners registry participants per year

This metric is no longer tracked.
Totals By Year
Related Program

PSC Partners Patient Registry

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The PSC Partners Patient Registry is a place to store information about those affected by PSC. The data collected includes information on diagnosis, family history, quality of life, medications, surge

Number of research studies conducted

This metric is no longer tracked.
Totals By Year
Related Program

Raise Funds for PSC Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

For more information, please visit http://pscpartners.org/research-grants/#Awarded_2019

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.

The goal of PSC Partners Seeking a Cure is to provide education and support to PSC patients and their caregivers, and to fund research into better treatments and a cure for the disease. Our dedication to this mission will continue until we have a world without PSC.

PSC Partners Seeking a Cure understands that patients are more than their disease. We recognize the critical importance of funding the very best in Primary Sclerosing Cholangitis (PSC) research, as well as providing support and resources for PSC patients and their caregivers until there is a cure. PSC Partners Seeking a Cure plans to meet these goals by holding annual conferences in conjunction with leading medical institutions, hosting a PSC Patient Registry, and facilitating promising PSC research.

The greatest strength of PSC Partners Seeking a Cure is its community of dedicated patients and caregivers, who are passionate about finding better treatments and a cure for PSC. Our annual conferences provide an avenue for PSC patients and caregivers to connect and support each other, and to learn of cutting-edge PSC research developments. The leadership of our organization thoroughly assesses and budgets for all of our programs on an ongoing basis. Our Scientific/Medical Advisory Committee consists of leading PSC medical experts who carefully evaluate and select the research that we fund annually. Our Patient Registry was created in collaboration with the NIH Office of Rare Diseases Research (ORDR), and all data is owned by PSC Partners Seeking a Cure. Patient privacy and site security are very important to PSC Partners. The Registry is monitored by an Institutional Review Board and is HIPAA and FISMA compliant.

To date, PSC Partners Seeking a Cure has awarded $4.3 million to research into better treatments and a cure for primary sclerosing cholangitis. Our Patient Registry provides a wealth of de-identified, disease-specific patient information for PSC researchers who would otherwise not have access to this information in one source. Over fourteen hundred and fifty PSC patients have chosen to participate in our Patient Registry, and more join every day. We also provide support to a thriving community of PSC patients and caregivers who share the common experience of coping with this rare disease. We have hosted 15 conferences, for PSC patients and caregivers, in conjunction major medical centers throughout the country. We have not yet found a cure, but we will work tirelessly until we do.

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 have PSC and their caregivers.

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

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

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

    We aim to collect feedback from as many people we serve as possible, 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 any major challenges to collecting feedback,

Financials

PSC Partners Seeking a Cure
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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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Connect with nonprofit leaders

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Build 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.

PSC Partners Seeking a Cure

Board of directors
as of 8/23/2021
SOURCE: Self-reported by organization
Board chair

Joanne Grieme

Air Group America

Term: 2018 - 2021

Ricky Safer

PSC Partners Seeking a Cure

Rachel Gomel

PSC Partners Seeking a Cure

Fred Sabernick

PSC Partners Seeking a Cure

Jennifer Sims

PSC Partners Seeking a Cure

Wes Hendrix

PSC Partners Seeking a Cure

Stuart Barnett

PSC Partners Seeking a Cure

Britt Moore

PSC Partners Seeking a Cure

Joanne Grieme

PSC Partners Seeking a Cure

Nicole DeSantis

PSC Partners Seeking a Cure

Kathy Halloran

PSC Partners Seeking a Cure

Jesse Kirkpatrick

PSC Partners Seeking a Cure

Willie McKinney

PSC Partners Seeking a Cure

Matt McMurtry

PSC Partners Seeking a Cure

Leah Sciabarrasi

PSC Partners Seeking a Cure

Trish Stoltzfus

PSC Partners Seeking a Cure

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 ? 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/19/2021,

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, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/19/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • 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 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.