PITT HOPKINS RESEARCH FOUNDATION
Don’t just hope for MIRACLES, FIGHT for THEM!
Programs and results
What we aim to solve
The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and an eventual cure of Pitt Hopkins syndrome and other similar disorders. The PHRF is also dedicated to supporting the Pitt Hopkins community with resource recommendations, parental support and the latest medical information. Our goal is to find a treatment as quickly as possible that will help give our children fuller, higher functioning lives.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Research and Family Support
The Pitt Hopkins Research Foundation (PHRF) supports research dedicated to finding a treatment, and an eventual cure of Pitt Hopkins syndrome and other similar disorders. The PHRF is also dedicated to supporting the Pitt Hopkins community with resource recommendations, parental support and the latest medical information.
Where we work
External reviews
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?
Although dealing with a rare disease, the group has been very successful at pulling together some of the best scientists in the field of neurological disorders and engaging our Scientific Advisory Board to better understand and develop a treatment for Pitt Hopkins Syndrome as quickly as possible with the ultimate goal of finding a cure. In addition, the organization supports regular scientific symposiums to bring researchers together to best share their findings and help accelerate research. Secondarily, the organization also aim to provide awareness and support to families and caregivers. Following the scientific symposiums, researchers provide parents with lay talks related to current research. A biennial family conference is also organized to work through some of the issues more impacting our community such as parental support, sibling support, emerging language/communication, among other issues families are facing with their children.
What are the organization's key strategies for making this happen?
1. Establishment and maintenance of a capable Scientific Advisory Board to review grant proposals and budgets and offer their expert opinions on the direction of the foundation in research into Pitt Hopkins Syndrome.
2. Development and management of research candidates in which to provide grant monies to study various aspects of Pitt Hopkins Syndrome with a goal to find a treatment as quickly as possible to give our children fuller, higher functioning lives and leading to an eventual cure.
3. Leveraging expertise from other rare disease groups, existing SAB and our researchers to set direction of current research grants and research direction.
4. Communication and support to our community through various communication channels.
What are the organization's capabilities for doing this?
Organizational capabilities include an established Board of Directors (BOD) that are staffed by family members who volunteer their time so that research funding can be maximized. Over 94% of all funds donated go to finding a treatment/cure. Our BOD is highly motivated and our dedicated members have varying experiences in both educational and work backgrounds to assist in successfully fulfilling our mission.
The Scientific Advisory Board (SAB) is comprised of experts within various scientific fields to provide a balanced view of research proposals to the board. A list of current SAB members and past and present research/researchers can be found on the pitthopkins.org website.
What have they accomplished so far and what's next?
We have funded numerous research proposals since 2012. We have built some foundational research including development of antibodies, mice models, stem cells lines, and more. We are driving toward more clinical trials with one or more of our researchers but we have not yet found a treatment or cure for Pitt Hopkins Syndrome. We feel very strongly that there is a cure out there.
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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PITT HOPKINS RESEARCH FOUNDATION
Board of directorsas of 02/07/2022
Audrey Lapidus
Pitt Hopkins Research Foundation
Term: 2013 -
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 -
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
Organizational demographics
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
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data