ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION INC

One Mission: End AHC

aka AHCF   |   Southfield, MI   |  ahckids.org

Mission

Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals.

Through research, education and family support, we have ONE MISSION: END AHC

Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.

Ruling year info

1997

President

Mrs. Lynn Egan

Main address

2000 Town Center Suite 1900

Southfield, MI 48075 USA

Show more contact info

Formerly known as

Alternating Hemiplegia Foundation

EIN

38-3225425

NTEE code info

Specifically Named Diseases (G80)

Fund Raising and/or Fund Distribution (H12)

Single Organization Support (H11)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

Communication

Programs and results

What we aim to solve

This profile needs more info.

If it is your nonprofit, add a problem overview.

Login and update

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?

Alternating Hemiplegia of Childhood

Find a cure and treatment for AHC

Population(s) Served
Families
People with disabilities

This program was established by the AHCF Board as a way to alleviate some of the financial challenges faced by those with AHC and their families.

Population(s) Served
Families

AHCF hosts a Biennial conference for AHC children, adults and their families in which they have an opportunity to meet the leading AHC researchers and clinicians from around the world, learn about the most up to date ideas for activities of daily living with the disorder and bond with other families and children with AHC. This is vitally important since it is such a rare disorder and otherwise parents would not have this opportunity.

Population(s) Served
Families
People with disabilities

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 shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve patients and families diagnosed with Alternating Hemiplegia of Childhood, researchers, and medical professionals working in our rare disease.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Case management notes, Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We are recognizing additional Family Support needs in our aging population ad finding research or resources to increase the level of their quality of life as young adults or adults.

  • With whom is the organization sharing feedback?

    Our board, Volunteers in committees dedicated to serving the three pillars of our mission.,

  • How has asking for feedback from the people you serve changed your relationship?

    Our relationship with our small community has been a close and positive one historically. Our efforts in listening to feedback have only strengthened the trust between our community and this organization representing them.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to ensure people feel comfortable being honest with us, 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,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION INC
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION INC

Board of directors
as of 4/14/2021
SOURCE: Self-reported by organization
Board chair

Mr. Joshua Marszalek

AHCF

Term: 2019 - 2022

Lynn Egan

AHCF

Joshua Marszalek

AHCF

Sharon Ciccodicola

AHCF

Vicky Platt

AHCF

Gene Andrasco

AHCF

Bill Gerber

AHCF

Renee Hodes

AHCF

Matt Sweeny

AHCF

Katelyn Wilson

AHCF

Kate Byrne

AHCF

April Hawk

AHCF

Stephen Henderson

AHCF

Heather Gates

AHCF

Cate Cohen

AHCF

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.

  • 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