PROPIONIC ACIDEMIA FOUNDATION

Searching for a Cure... Hope for our Children

Highland Park, IL   |  www.pafoundation.com

Mission

The Propionic Acidemia Foundation is a 501(c)3 non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Ruling year info

2003

President

Jill Chertow Franks

Main address

1963 McCraren Road

Highland Park, IL 60035 USA

Show more contact info

EIN

33-1043399

NTEE code info

Specifically Named Diseases Research (H80)

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

Our mission is to find improved treatment and a cure for Propionic Acidemia, a rare, life threatening inborn error of metabolism.

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?

Advancing Research

PAF has awarded over 30 research grants totaling over $1,000,000. The Propionic Acidemia International Patient Registry includes patient entered information and can be searched by participants. Researchers can request data and a publication is currently in process. A DNA repository has been established at Coriell Institute for Research including data elements and many samples have been used by researchers to advance knowledge of propionic acidemia. More information can be found on or research page: http://www.pafoundation.com/resarch-development/

Population(s) Served
Adults

Twice a year newsletters were sent out to affected families, professionals, donors, and other interested individuals. Approximately 1,100 newsletters are mailed out and an electronic notification is e-mailed to approximately 900. Host PAF Education Conferences and Family Day events. Sponsor/exhibit at relevant conferences like SIMD and GMDI.

Population(s) Served
Adults
Families

Most of the funds received are from individual donations and fundraisers hosted by affected individuals and their families. These have been from a variety of events.
PAF solicits medical food providers and pharmaceutical companies for sponsorship of events and the semi-annual newsletter. PAF also sends out one mailer per year from our own internal list of interested individuals.

Population(s) Served
Adults

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 conference attendees

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

Chronically ill people, People with intellectual disabilities

Related Program

Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of registered attendees at the conference. May include late cancellations or no shows. There was no conference in 2019. In 2020, the number represents the number of devices signed on.

Number of research studies funded

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

Chronically ill people

Related Program

Advancing Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This relates to the number of research studies funded. It does not include any no cost grant extensions.

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.

Encourage new researchers to invest their time in researching propionic acidemia. Continue providing grants to help obtain better treatments and a cure for propionic acidemia. Host Conferences for researchers, doctors and families.

Reach out to the medical community to encourage interest in Propionic Acidemia Research. Work with our medical advisory board to plan a conference. Increase outreach efforst by attending and exhibiting at medical conferences.

PAF has a strong Medical Advisory Board to help with suggestions on outreach and review grant submissions. PAF has very generous industry sponsors. PAF has successfully planned conferences in the past. PAF has connected researchers for the purpose of collaboration.

Conferences were held in June 2017 and October 2018. Registrations for the 2018 conference was up 25% including a 50% increase of affected families attending. In 2020, we had to change our in person conference to a Virtual one. There were 68 registrations from 13 countries. This was an increase in affected families attending.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.),

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

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations,

  • What significant change resulted from feedback?

    We surveyed those that attended our Virtual Family Day to find out how often they would like to be updated and will follow the recommendations.

  • With whom is the organization sharing feedback?

    Our board, Speakers at our events.,

  • What challenges does the organization face when collecting feedback?

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

Financials

PROPIONIC ACIDEMIA FOUNDATION
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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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

PROPIONIC ACIDEMIA FOUNDATION

Board of directors
as of 1/28/2021
SOURCE: Self-reported by organization
Board chair

Jill Chertow

no affiliation

Term: 2002 -

Brittany Smith

No affiliation

Jill Chertow

No affiliation

Angela Waits

No affiliation

Maria Cotrina

No affiliation

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 1/28/2021,

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

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data