Families for HoPE, Inc.

Sharing the HoPE in Holoprosencephaly

Indianapolis, IN   |  http://www.familiesforhope.org

Mission

Families for HoPE serves the families of infants and children receiving a diagnosis of Holoprosencephaly (HPE), the most common brain malformation in a developing fetus. HPE occurs between days 17-21 of fetal development, and typically ends in early miscarriage. Current studies indicate that only 3% of all fetuses diagnosed with HPE survive to delivery and a vast majority of these infants do not survive past six months of life, so the medical community offers very little hope when delivering this diagnosis to parents.

Ruling year info

2006

Treasurer/Executive Director

Leslie Harley

Main address

1219 N. Wittfield St

Indianapolis, IN 46229 USA

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EIN

20-4541651

NTEE code info

Brain Disorders (G48)

Brain Disorders (G48)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

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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?

Family Conferences on Holoprosencephaly

The Family Conference on Holoprosencephaly is the only conference in existence focusing on the topic of Holoprosencephaly (HPE), and this conference continues to be a model among rare disorders in that it brings 100+ affected families together with leading research scientists and clinicians. Attendees representing multiple countries come together to focus on daily living skills, medical needs and scientific research progress. These conferences are held biennially.

Population(s) Served

Families for HoPE seeks to connect families to other HPE families to encourage the sharing of stories and experiences as parents, build bonds that strengthen families, and decrease the feelings of isolation.

Population(s) Served

Where we work

Financials

Families for HoPE, Inc.
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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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Families for HoPE, Inc.

Board of directors
as of 6/8/2019
SOURCE: Self-reported by organization
Board co-chair

Joshua Timmerman

No Affiliation

Term: 2016 - 2020


Board co-chair

Becky Wilson

No Affiliation

Term: 2019 - 2020

Leslie Harley

No Affiliation

Roxanne Steele

No Affiliation

Joshua Timmerman

No Affiliation

Becky Wilson

No Affiliation

Cheryl Lehman

No Affiliation

Heather Rinard

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 ? Not applicable