|
Shoutout to Emily (left) Matt, Emily (center) and Nick (right) for advocating for people with hemophilia B at the capitol!
Advocacy in Action
by Lee Hall
June 18th was a typical hot and humid day in DC when the Coalition for Hemophilia B advocacy team spent the day on the Hill with a CHB Family. It was a first time for Matt, Nick, and Megan. Throughout the day, we crisscrossed over the Capitol, going between the House and Senate offices. They shared their story of how their lives have been impacted and shaped by Hemophilia B.
We discussed the importance of bleeding disorders treatment centers and how H.R. 1 would potentially impact families served by CHB. Following the
meetings, we were all given House and Senate passes to tour the Capitol and Senate Chambers.
We talked about the importance of advocacy and how anyone can do it. Nick was quite excited to see all of the sites on Capitol Hill, and their family had their photo taken with the swelling pride and excitement that comes with being advocates on Capitol Hill for the first time.
Matt said his family was not new to advocacy. He said his wife has previously attended state advocacy days in Maryland, but he believes this was an extremely beneficial opportunity for him and his family to do something in our nation’s Capitol.
Every voice counts and we're grateful for active members of our community who make sure their voices are heard! For more information on advocacy, please visit: hemob.org/advocacy
| 
