PITT HOPKINS RESEARCH FOUNDATION

Don’t just hope for MIRACLES, FIGHT for THEM!

Plymouth, MA   |  www.pitthopkins.org

Mission

The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and hopefully an eventual cure of Pitt Hopkins and other similar disorders. Made up of families for families, the PHRF is also dedicated to supporting PTHS children with resource recommendations, parental support and the latest medical information.

Our board and officers are parents and professionals who volunteer their time, so that over 93% of all funds raised and donated go to finding a cure. Our goal is to find a treatment as quickly as possible that will help give our children fuller, higher functioning lives.

Ruling year info

2013

President

Audrey Davidow Lapidus

Main address

PO Box 6257

Plymouth, MA 02362 USA

Show more contact info

EIN

46-0770142

NTEE code info

Fund Raising and/or Fund Distribution (E12)

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

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Children and youth
Adults

Where we work

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.

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.

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.

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.

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

PITT HOPKINS RESEARCH 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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PITT HOPKINS RESEARCH FOUNDATION

Board of directors
as of 02/07/2022
SOURCE: Self-reported by organization
Board chair

Audrey Lapidus

Pitt Hopkins Research Foundation

Term: 2013 -

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
  • 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

SOURCE: Self-reported; last updated 2/7/2022

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
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data