National Tuberous Sclerosis Association Inc
Donations deductibleNational Tuberous Sclerosis Association Inc's network
30 people3 organisationsi30 people and 3 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (30). Violet dotted lines (5) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
30 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 in the tables. The network map shows same-name matches as likely links only, never as confirmed.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 30 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Paul Waxlax Chair | Board Chair | 2020 | 6 yrs |
| Andrew Duffy | Director | 2025 | 1 yr |
| Andrew Sperling | Director | 2024 | 2 yrs |
| Angelique Bordey | Director | 2025 | 1 yr |
| Bill Joseph | Director | 2025 | 1 yr |
| Brittany Smith | Vice Chair | 2022 | 4 yrs |
| Chip Burkhalter | Director | 2023 | 3 yrs |
| Danielle Clark | Director | 2025 | 1 yr |
| David Johnston | Director | 2025 | 1 yr |
| Derek Bauer | Director | 2021 | 5 yrs |
| Frances Briones | Director | 2024 | 2 yrs |
| Jessica Krefting | Director | 2021 | 5 yrs |
| Jim O'Heir | Director | 2025 | 1 yr |
| Jonathan Goldstein | Director | 2023 | 3 yrs |
| Juian Gangolli | Director | 2025 | 1 yr |
| Julie Blum | Director | 2020 | 6 yrs |
| Kristi Lengyel | Company secretary | 2022 | 4 yrs |
| Laura Marks | Director | 2020 | 6 yrs |
| Lesley Holmes | Director | 2022 | 4 yrs |
| Lisa Carlton | Director | 2022 | 4 yrs |
| Lisa Henske | Director | 2025 | 1 yr |
| Mark Carroll | Director | 2020 | 6 yrs |
| Mark Spotts | Treasurer | 2024 | 2 yrs |
| Noor Panjwani | Director | 2025 | 1 yr |
| Patroski Lawson | Director | 2022 | 4 yrs |
| Richard A Gollub (also filed as Rich Gollub) | Director | 2025 | 1 yr |
| Sara Chieffo | Director | 2018 | 8 yrs |
| Shafali Jeste | Director | 2023 | 3 yrs |
| Tanjala Gipson | Director | 2021 | 5 yrs |
| Vanessa Vazquez | Director | 2020 | 6 yrs |
Officers and senior leadership
17 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| April Cooper | Vice President, Community Programs | since 2020 |
| Ashley Pounders | Director, Medical Affairs | since 2021 |
| Cynthia Arcuri | Chief Financial Officer | since 2022 |
| Dean Rager-Aguiar | Vice President, Translational Research | since 2019 |
| Gail Saunders | Director, Community Programs | 2025 |
| Heather Radtke | Director, Clinical Programs | 2025 |
| Jamie Saylor | Chief Financial Officer | 2025 |
| Jaye D Isham | VP, Communications Strategy | since 2018 |
| Jaye Isham | Senior Vice President, Strategic Communications | since 2022 |
| Kari L Rosbeck | President & CEO | since 2018 |
| Kari Luther Rosbeck | President & CEO | since 2022 |
| Lisa M Moss | Sr. Director, Donor Relations | since 2019 |
| Lisa Moss | Vice President, Donor Relations | since 2018 |
| Richard A Gollub | Controller & CFO | 2018 |
| Richard Gollub | Chief Financial Officer | since 2019 |
| Steven L Roberds | Chief Scientific Officer | since 2018 |
| Steven Roberds | Chief Scientific Officer | since 2022 |
Pay and hours
year to 31 December 2025iFrom 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.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Steven Roberds | Chief Scientific Officer | 45 | $256k | $31k | |
| Kari Luther Rosbeck | President & CEO | 54 | $255k | $32k | |
| Dean Rager-Aguiar | Vice President, Translatio | 45 | $192k | $34k | |
| Jamie Saylor | Chief Financial Officer | 45 | $143k | $5k | |
| Lisa Moss | Vice President, Donor Rela | 45 | $136k | $29k | |
| Heather Radtke | Director, Clinical Programs | 45 | $120k | $16k | |
| Gail Saunders | Director, Community Programs | 45 | $103k | $15k | |
| Paul Waxlax | Board Chair | 5 | $0 | ||
| Brittany Smith | Vice Chair | 5 | $0 | ||
| Mark Spotts | Treasurer | 5 | $0 | ||
| Kristi Lengyel | Secretary | 2 | $0 | ||
| Derek Bauer | Director | 2 | $0 | ||
| Julie Blum | Director | 2 | $0 | ||
| Angelique Bordey | Director | 2 | $0 | ||
| Frances Briones | Director | 2 | $0 | ||
| Chip Burkhalter | Director | 2 | $0 | ||
| Lisa Carlton | Director | 2 | $0 | ||
| Mark Carroll | Director | 2 | $0 | ||
| Sara Chieffo | Director | 2 | $0 | ||
| Danielle Clark | Director | 2 | $0 | ||
| Andrew Duffy | Director | 2 | $0 | ||
| Juian Gangolli | Director | 2 | $0 | ||
| Tanjala Gipson | Director | 2 | $0 | ||
| Jonathan Goldstein | Director | 2 | $0 | ||
| Rich Gollub | Director | 2 | $0 | ||
| Lisa Henske | Director | 2 | $0 | ||
| Lesley Holmes | Director | 2 | $0 | ||
| Shafali Jeste | Director | 2 | $0 | ||
| David Johnston | Director | 2 | $0 | ||
| Bill Joseph | Director | 2 | $0 | ||
| Jessica Krefting | Director | 2 | $0 | ||
| Patroski Lawson | Director | 2 | $0 | ||
| Laura Marks | Director | 2 | $0 | ||
| Jim O'heir | Director | 2 | $0 | ||
| Noor Panjwani | Director | 2 | $0 | ||
| Andrew Sperling | Director | 2 | $0 | ||
| Vanessa Vazquez | Director | 2 | $0 |
Colorado roster
33 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20263022564). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.| Name | Title as filed |
|---|---|
| Noor Panjwani | Director |
| Jessica Krefting | Director |
| Brittany Smith | Vice Chair |
| Laura Marks | Director |
| Mark Spotts | Treasurer |
| Lesley Holmes | Director |
| Frances Briones | Director |
| Derek Bauer | Director |
| Lisa Henske | Director |
| Julie Blum | Director |
| Tanjala Gibson | Director |
| Richard Gollub | Director |
| Vanessa Vazquez | Director |
| Kristi Lengyel | Secretary |
| Shafali Jeste | Director |
| Bill Joseph | Immediate Past Chair |
| Kari Luther Rosbeck | President, CEO |
| Andrew Sperling | Director |
| Paul Waxlax | Chair |
| Jim O'heir | Director |
| Lisa Carlton | Director |
| Danielle Clark | Director |
| Jonathan Goldstein | Director |
| Chip Burkhalter | Director |
| David Johnston | Director |
| Roland James Saylor | CFO |
| Sara Chieffo | Director |
| Patroski Lawson | Director |
| Kari Luther Rosbeck | President/ CEO |
| Mark Carroll | Director |
| Julian Gangolli | Director |
| Angelique Bordey | Director |
| Kari Luther Rosbeck |
About
- Legal name
- National Tuberous Sclerosis Association Inc
- EIN
- 953018799
- Address
- 8737 Colesville Rd Ste 400, Silver Spring, MD, 20910-3921
- State
- Maryland
- Mission
- To improve quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. (as filed on the Form 990)
- Activity (NTEE)
- G030 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
- 8 (IRS master file code)
- Formed
- 1975
- Principal officer
- Kari L Rosbeck (as named on the Form 990)
- IRS ruling date
- 1 October 1975
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 8, latest 2025
- IRS Publication 78
- PC (contributions deductible)
Most connected
Related organisations (Schedule R)
Longest observed on the filings
≥8years on the filingsSara Chieffo
≥6years on the filingsPaul Waxlax
≥6years on the filingsJulie Blum
≥6years on the filingsLaura Marks
Latest return
year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.- Total assets
- $18m
- Total liabilities
- $2m
- Net assets or fund balances
- $16m
- Contributions and grants received
- $6.1m
- Program service revenue
- $2.7m
- Grants and similar paid out
- $1m
- Employees
- 26
- Volunteers
- 385
Filed finances
1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $10m | $8.7m | $1.3m |
As filed on the IRS Form 990. US dollars.
Grants paid
11 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| National Organization for Rare Disorders | Tsc travel and lodging assistance program | $150k |
| Boston Children's Hospital | Research grant | $101k |
| Emory University | Research grant | $75k |
| Northwestern University | Research grant | $75k |
| University of Massachusetts | Research grant | $75k |
| Baylor College of Medicine | Research grant | $56k |
| University of California Irvine | Research grant | $56k |
| University of Texas Dallas | Research grant | $56k |
| Clemson University | Research grant | $20k |
| The Regents of the University of California | Research grant | $19k |
| Cincinnati of Children's Hospital | Research grant | $19k |