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
2003
President
Jill Chertow
Main address
PO Box 151
Deerfield, IL 60015 USA
EIN
33-1043399
NTEE code
Specifically Named Diseases Research (H80)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
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Communication
Programs and results
What we aim to solve
Our mission is to find improved treatment and a cure for Propionic Acidemia, a rare, life threatening inborn error of metabolism.
Our programs
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 $1,200,000. 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/
Outreach
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.
Fundraising
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.
Where we work
External reviews
Our results
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. There were another 3 extensions due to Covid 19 impact on the labs.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.),
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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,
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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.
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With whom is the organization sharing feedback?
Our board, Speakers at our events.,
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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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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PROPIONIC ACIDEMIA FOUNDATION
Board of directorsas of 03/22/2022
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
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