On Feb 20th, 2024 Rep. Paul Tonko (NY-20) and original cosponsors Rep. Gus Bilirakis (FL-12) and Rep. Ralph Norman (SC-5) introduced H.Res. 1025 Expressing support for the designation of April 5, 2024, as "Barth Syndrome Awareness Day".

Click the H.Res. 1025 link to see if your US Representative is a cosponsor. 

If their name is there reach out to thank them for cosponsoring H.Res. 1025. 

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. 1025 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.