On March 10th, 2025, Rep Tonko (D NY-20) introduced H.Res. 209 designating April 5th, 2025 as Barth Syndrome Awareness Day with Rep Bilirakis (R FL-12), Rep, Doris Matsui (CA-07), Rep Norman (R SC-5), Rep. Lori Trahan (MA-03), Rep. Joe Wilson (SC-02) and Rep. Jake Auchincloss (MA-04) as original co-sponsors, importantly making this a bipartisan resolution.  

Click the H.Res. 209 link to see if your US Representative is a cosponsor. 

If their name is there reach out to thank them for cosponsoring H.Res. 209. 

If their name is not there, reach out to let them know you are constituent in their district.  Ask them to cosponsor of H.Res. 209 in support of Barth Syndrome Awareness Day to highlight the need for increased awareness, improved diagnosis, new therapies for Barth syndrome and improve regulatory pathways for ultra-rare drug development. And let them know why this is important to you.