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US nonprofit · EIN 454955538 · Livonia, MIiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 454955538) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2024: assets, liabilities, staff, website, telephone, pay, related organisations (Schedule R).Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Principal officer IRS Form 990-N (e-Postcard) - principal officer named for tax year 2014.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.Licence US Federal Government public domain.How we handle data

Huntingtons Disease Youth Organization of America

Donations deductible
Revenue
$416k
year to 31 December 2024
Expenses
$349k
year to 31 December 2024
Total assets
$452k
$0 liabilities
Net assets
$452k
assets less liabilities
Directors and trustees
14
4.1y av
Staff
0
25 volunteers
Chair observed
≥1 yr
Ariana Pullin
Left since last filing
2
14% of the board
How am I connected?

Huntingtons Disease Youth Organization of America's network

14 peoplei14 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (14). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.

The board

14 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 8 voting members of its governing body on its latest Form 990 Part VI; we list 14 in Part VII (Part VII does not always name every voting member).
NameRole as filedSinceOn the board
Ariana Pullin ChairChair2023
3 yrs
Ashley ClarkeBoard Member2022
4 yrs
Clare BraithwaiteBoard Member2022
4 yrs
Dr Bonnie Hennig-TrestmentBoard Member2022
4 yrs
Dr Katherine McDonellBoard Member2024
2 yrs
Dr Kelly AtkinsVice Chair, Interim Secretary2022
4 yrs
Dr Lauren ByrneBoard Member2022
4 yrs
Jarrod StrydomTerm Ended March 20242022
4 yrs
Jenna HeilmanExecutive Director2022
4 yrs
Jenny HarteBoard Member2022
4 yrs
Lauren YoungborgTerm Ended August 20242022
4 yrs
Matthew ShoreTerm Ended August 20242022
4 yrs
Paul ConnBoard Member2023
3 yrs
Trey RandallTerm Ended August 20242022
4 yrs
Under 5 years5 to 6 years6 years or moreShow all 14 →

Pay and hours

year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Jenna HeilmanExecutive Director15$110k
Dr Bonnie Hennig-TrestmentBoard Member2$0
Trey RandallTerm Ended August 202415$0
Jarrod StrydomTerm Ended March 202415$0
Dr Kelly AtkinsVice Chair, Interim Secretary2$0
Dr Lauren ByrneBoard Member2$0
Lauren YoungborgTerm Ended August 20242$0
Ashley ClarkeBoard Member2$0
Matthew ShoreTerm Ended August 20242$0
Clare BraithwaiteBoard Member2$0
Jenny HarteBoard Member2$0
Ariana PullinChair2$0
Paul ConnBoard Member2$0
Dr Katherine McDonellBoard Member2$0

About

Legal name
Huntingtons Disease Youth Organization of America
EIN
454955538
Address
Po Box 530276, Livonia, MI, 48153-0276
State
Michigan
Mission
The huntington's disease youth organization of america is a non-profit organization set up to specifically provide support for young people around the world impacted by huntington's disease. The organization provides support, education and guidance to young people and their families impacted by huntington's disease and promotes awareness and provides education within professional settings... (as filed on the Form 990)
Activity (NTEE)
G192 Voluntary health associations and medical disciplines
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Voluntary Health Associations & Medical Disciplines
Size band
4 (IRS master file code)
Formed
2013
Principal officer
Jenna Heilman (as named on the Form 990)
IRS ruling date
1 March 2014
Status
Code 01 (unconditional exemption)
Form 990 filings on record
6, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥4years on the filingsAshley Clarke
≥4years on the filingsClare Braithwaite
≥4years on the filingsDr Bonnie Hennig-Trestment
≥4years on the filingsDr Kelly Atkins

Latest return

year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.
Total assets
$452k
Total liabilities
$0
Net assets or fund balances
$452k
Contributions and grants received
$416k
Program service revenue
$0
Grants and similar paid out
$56k
Employees
0
Volunteers
25

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$416k$349k$67k

As filed on the IRS Form 990. US dollars.