Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

aka Sisters Hope Foundation   |   Myerstown, PA   |
GuideStar Charity Check

Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

EIN: 85-4152247


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 info


President and Founder

Heidi L Edwards

Main address

PO Box 12

Myerstown, PA 17067 USA

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Subject area info


Diseases and conditions

Population served info


NTEE code info

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

Show Forms 990



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?

ALSP Support

Sisters' Hope Foundation provides support and resources for those affected by ALSP/HDLS and POLD.

Population(s) Served
Family relationships

Where we work

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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

  • 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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback


Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Financial data

SOURCE: IRS Form 990

Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

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.

Fiscal year ending: cloud_download Download Data


The people, governance practices, and partners that make the organization tick.

Form 1023/1024 is not available for this organization

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 employees

SOURCE: IRS Form 990

Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Sisters Hope Foundation for Hereditary Diffuse Leukoencephalop

Board of directors
as of 02/22/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Heidi Edwards

Sisters' Hope Foundation

April Aurentz

Tara S Parker

Kelly Mounts

Kimberly Cade

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
  • 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

SOURCE: Self-reported; last updated 7/19/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.


The organization's leader identifies as:

Race & ethnicity
Gender identity
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation


Equity strategies

Last updated: 07/19/2023

GuideStar 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

Policies and processes
  • 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.