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
2006
Treasurer/Executive Director
Leslie Harley
Main address
1219 N. Wittfield St
Indianapolis, IN 46229 USA
EIN
20-4541651
NTEE code
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
Programs and results
What we aim to solve
Our programs
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.
Parent to Parent Support
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.
Where we work
External reviews
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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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Families for HoPE, Inc.
Board of directorsas of 6/8/2019
Joshua Timmerman
No Affiliation
Term: 2016 - 2020
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
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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 ? Not applicable
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