# 119-hres-1060: Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".

119-hres-1060, Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day"., is a 119th Congress bill sponsored by Rep. Tonko, Paul [D-NY-20] (D-NY); status introduced (as of 2026-10-03).

- Canonical: https://policyrisk.com/legislation/119-hres-1060
- As of: 2026-10-03
- Plain-text twin of the page above; the HTML and this file carry the same facts.

## Facts
- Bill: 119-hres-1060
- Congress: 119
- Title: Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".
- Status: introduced
- Introduced: 2026-02-11
- Sponsor: Rep. Tonko, Paul [D-NY-20] (D-NY)
- Cosponsors: 11
- Policy area: Health
- Touches household money: no
- Last recorded action: 2026-10-03

## Summary

**Barth Syndrome Awareness Day** would designate April 5, 2026 to raise public awareness of Barth syndrome, a rare, life-threatening genetic disorder that primarily affects males. The resolution describes the TAFAZZIN gene mutation and multisystem effects including heart and skeletal muscle problems, low neutrophils, and growth delays. It highlights very low incidence with fewer than 160 U.S. diagnoses and about 300 worldwide, high childhood mortality, no FDA-approved treatment for children under 30 kilograms, and a single dedicated U.S. clinic at Kennedy Krieger. It would call for better awareness, earlier diagnosis, more research, development of treatments and diagnostics, and clearer regulatory pathways for ultrarare diseases.

## Cosponsors (11)

- Rep. Bilirakis, Gus M. [R-FL-12] (R-FL), 2026-02-11T00:00:00.000Z
- Rep. Matsui, Doris O. [D-CA-7] (D-CA), 2026-02-11T00:00:00.000Z
- Rep. Norman, Ralph [R-SC-5] (R-SC), 2026-02-11T00:00:00.000Z
- Rep. Trahan, Lori [D-MA-3] (D-MA), 2026-02-11T00:00:00.000Z
- Rep. Auchincloss, Jake [D-MA-4] (D-MA), 2026-02-11T00:00:00.000Z
- Rep. McGarvey, Morgan [D-KY-3] (D-KY), 2026-02-11T00:00:00.000Z
- Rep. Davids, Sharice [D-KS-3] (D-KS), 2026-02-11T00:00:00.000Z
- Rep. Wilson, Joe [R-SC-2] (R-SC), 2026-02-11T00:00:00.000Z
- Rep. Biggs, Sheri [R-SC-3] (R-SC), 2026-02-11T00:00:00.000Z
- Rep. Latimer, George [D-NY-16] (D-NY), 2026-02-11T00:00:00.000Z
- Rep. Foushee, Valerie P. [D-NC-4] (D-NC), 2026-03-19T00:00:00.000Z

## Related bills

- 119-hr-979: AM Radio for Every Vehicle Act of 2025
- 119-hr-3514: Improving Seniors’ Timely Access to Care Act of 2025
- 119-hr-1993: 25th Anniversary of 9/11 Commemorative Coin Act
- 119-hres-209: Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".
- 119-hr-1262: Mikaela Naylon Give Kids a Chance Act
- 119-hr-842: Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act

## Sources
- [119-hres-1060 on Congress.gov](https://www.congress.gov/bill/119th-congress/house-resolution/1060)

## Related
- [119-hr-979: AM Radio for Every Vehicle Act of 2025](https://policyrisk.com/legislation/119-hr-979)
- [119-hr-3514: Improving Seniors’ Timely Access to Care Act of 2025](https://policyrisk.com/legislation/119-hr-3514)
- [119-hr-1993: 25th Anniversary of 9/11 Commemorative Coin Act](https://policyrisk.com/legislation/119-hr-1993)
- [119-hres-209: Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awa…](https://policyrisk.com/legislation/119-hres-209)
- [119-hr-1262: Mikaela Naylon Give Kids a Chance Act](https://policyrisk.com/legislation/119-hr-1262)
- [119-hr-842: Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage A…](https://policyrisk.com/legislation/119-hr-842)
- [All bills in Congress](https://policyrisk.com/legislation)

Source: PRIA, https://policyrisk.com/legislation/119-hres-1060 (as of 2026-10-03).