GOLD2023

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Supporting Young People Impacted by Huntington's Disease

aka HDYO   |   Livonia, MI   |  www.hdyo.org
GuideStar Charity Check

HUNTINGTONS DISEASE YOUTH ORGANIZATION

EIN: 45-4955538

Mission

Provide support for young people (35 and under) around the world impacted by Huntington's disease (HD).We work with young people all over the world. Our website is translated into 15 languages to make education about Huntington's Disease easy to understand. HD is a scary disease. It's our goal that when young people learn about HD in their lives www.HDYO.org helps create a positive first impression about the disease. We hold in-person youth camps in North America, Europe and Australia that brings together young people to gain support, education, connection and have lots of fun. These camps are fully funded through partnerships and have positively impacted the lives of hundreds of young people worldwide. We have 3 employees and a host of volunteers worldwide.

Notes from the nonprofit

Please reach out to us with any questions about the work we do and how we manage the organization. [email protected]

Ruling year info

2014

Executive Director

Jenna Heilman

Main address

PO Box 530276

Livonia, MI 48153 USA

Show more contact info

EIN

45-4955538

Subject area info

Unknown or not classified

Diseases and conditions

Population served info

Children and youth

People with diseases and illnesses

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

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

Affiliations

See related organizations info

Programs and results

Reports and documents
2022 Annual Report 2021 HDYO Annual Report 2022 HDYO Five Year Strategy

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?

Youth Services USA

We host a Camp in the United States where we offer scholarships for young people to attend. These camps bring together people who are new to the Huntington's disease community and haven't connected with anyone else to form lifelong bonds as well as learn about research, mental health tools and coping abilities.

Population(s) Served

In partnership with the HDSA, HDYO leads a program where we train young adults impacted by HD to serve as mentors for others who are new to the community or going through a hard time. The mentors go through extensive training to support their mentors and are paired based on similar circumstances, relationships to HD and/or geographic locations.

Population(s) Served
Children and youth
People with diseases and illnesses
Children and youth
People with diseases and illnesses
Young adults

Where we work

Videos

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

  • 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 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 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 share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

HUNTINGTONS DISEASE YOUTH ORGANIZATION
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

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

Liquidity in 2022 info

SOURCE: IRS Form 990

0.00

Average of 0.00 over 7 years

Months of cash in 2022 info

SOURCE: IRS Form 990

13.1

Average of 6.6 over 7 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

0%

Average of 3% over 7 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

HUNTINGTONS DISEASE YOUTH ORGANIZATION

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

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of HUNTINGTONS DISEASE YOUTH ORGANIZATION’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Fiscal year: Jan 01 - Dec 31 picture_as_pdf View full report cloud_downloadDownload data

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $14,874 $23,633 $37,147 $106,956 $6,778
As % of expenses 3.7% 7.0% 12.4% 59.8% 2.9%
Unrestricted surplus (deficit) after depreciation $14,874 $23,633 $37,147 $106,956 $6,778
As % of expenses 3.7% 7.0% 12.4% 59.8% 2.9%
Revenue composition info
Total revenue (unrestricted & restricted) $415,822 $361,807 $454,833 $202,772 $220,565
Total revenue, % change over prior year 36.2% -13.0% 25.7% -55.4% 8.8%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.0% 0.0% 0.0% 0.0% 0.0%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 100.0% 99.0% 100.0% 100.0% 100.0%
Other revenue 0.0% 1.0% 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $400,948 $338,174 $298,686 $178,816 $229,787
Total expenses, % change over prior year 26.1% -15.7% -11.7% -40.1% 28.5%
Personnel 20.2% 24.8% 27.8% 26.4% 43.5%
Professional fees 0.0% 0.1% 1.0% 1.5% 2.4%
Occupancy 0.0% 0.8% 0.3% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 32.8% 50.0% 61.1% 69.9% 34.8%
All other expenses 47.0% 24.4% 9.9% 2.1% 19.3%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $400,948 $338,174 $298,686 $178,816 $229,787
One month of savings $33,412 $28,181 $24,891 $14,901 $19,149
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $434,360 $366,355 $323,577 $193,717 $248,936

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 1.7 2.9 9.5 17.5 13.1
Months of cash and investments 1.7 2.9 9.5 17.5 13.1
Months of estimated liquid unrestricted net assets 1.7 2.9 4.7 15.1 12.1
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $57,106 $80,391 $236,386 $260,342 $251,120
Investments $0 $0 $0 $0 $0
Receivables $0 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 0.0% 0.0% 0.0% 0.0% 0.0%
Unrestricted net assets $0 $0 $117,886 $224,842 $231,620
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $119,000 $36,000 $20,000
Total net assets $57,106 $80,739 $236,886 $260,842 $251,620

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Letter of Determination
Form 1023/1024 is not available for this organization

Executive Director

Jenna Heilman

Number of employees

Source: IRS Form 990

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

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

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Highest paid employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of highest paid employee data for this organization

HUNTINGTONS DISEASE YOUTH ORGANIZATION

Board of directors
as of 08/01/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board co-chair

Seth Rotberg


Board co-chair

Trey Randall

Bonnie Hennig

Clare Braithwaite

Ashley Clarke

Jenny Harte

Lauren Byrne

Lauren Youngborg

Kelly Atkins

Matt Shore

Jarrod Strydom

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 ? No
  • 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
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/31/2023
info Candid has made improvements to the race and ethnicity options.

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
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/31/2023

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

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
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.