Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
EIN: 85-4152247
as of September 2023
as of September 18, 2023
Mission
The mission of Sisters’ Hope Foundation is to support and empower families impacted by Adult-onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP) by: * educating the public to increase awareness around this rare disease * advocating for further research and funding to improve treatment options * connecting patients and families with this diagnosis to build community and support * providing financial assistance and resources to those in need Additional names used: HDLS, CSF1R related leukoencephalopathy (CRL), POLD
Ruling year
2021
President and Founder
Heidi L Edwards
Main address
PO Box 12
Myerstown, PA 17067 USA
EIN
85-4152247
Nonprofits
Diseases and conditions
Population served
Health
NTEE code
Specifically Named Diseases (G80)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
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?
ALSP Support
Sisters' Hope Foundation provides support and resources for those affected by ALSP/HDLS and POLD.
Where we work
External reviews
Photos
Videos
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 using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
Revenue vs. expenses: breakdown
Financial data
Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Revenue & expensesFiscal Year: Jan 01 - Dec 31
Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Balance sheetFiscal Year: Jan 01 - Dec 31
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President and Founder
Heidi L Edwards
About Heidi Edwards
Heidi Edwards is the President and Founder of Sisters’ Hope Foundation. She holds a Bachelor of Arts in
psychology from Alvernia University and a Master of Arts in Human Resource Management and Labor
Relations from St. Francis University.
Heidi’s passion is raising awareness and advocating for those affected by ALSP/HDLS and CSF1R related leukoencephalopathy. Her journey with the disease started over twenty years ago when her aunt was diagnosed, followed by her mother, uncle and two sisters.
In 2020, she knew she needed to continue pushing forward with Sisters’ Hope Foundation because her sisters were both showing signs of disease progression. As the only sister without the genetic mutation
of the CSF1R gene, she needed to be their voice. Her mission to save future generations started with a
Facebook group for her sisters called Heather and Holly’s Hope. Sisters' Hope Foundation has now grown into a global organization.
Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
There are no highest paid employees recorded for this organization.
Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Board of directorsas of 07/19/2023
Board of directors data
Heidi Edwards
Sisters' Hope Foundation
April Aurentz
Tara S Parker
Kelly Mounts
Kimberly Cade
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 ? Not applicable -
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? Not applicable -
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? Not applicable
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
Gender identity
Sexual orientation
Disability
Equity strategies
Last updated: 07/19/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.
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- Letter of Determination
- Officer and/or Employee data for 2022
- Contractor and/or Paid Preparer data for 2022
- Board of Directors data for 2023
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