

Time & Location
Jul 29, 2019, 7:00 AM
United States Congresspersons Arizona Di, Arizona, USA
About the Event
Thanks to Rare Disease Legislative Advocates (part of The Everylife Foundation), T.E.A.M. 4 Travis participated in RARE ACROSS AMERICA during Congress' Summer Recess. We met with Arizona Congresswoman Debbie Lesko and her Deputy District Director Chelsea Lett to discuss Rare Diseases like Isolated Congenital Asplenia. We shared Travis' story and invited Representative Lesko to join the Rare Disease Congressional Caucus to help her Arizona Rare Disease families have a stronger voice on Capitol Hill.Our second stop on our Rare Across America journey found us partnering with fellow Arizona Rare Disease moms Aimee Griffith-Johnson and Jackie Hoffman and Rare Disease patient Jesica Silla to visit with the staff at Senator Martha McSally's Phoenix office. During the meeting with Outreach Coordinator Matthew Schiumo and East Valley Outreach Coordinator David Romney, we presented the top 3 current issues so important to Rare Disease Legislative Advocates. We asked for Senator McSally's support for the…