Mon, Jul 29 | United States Congresspersons Arizona Di

RARE ACROSS AMERICA

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RARE ACROSS AMERICA

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 Rare Disease Burden Study and co-sponsorship of Senate Bill S.2158, the Newborn Screening Saves Lives Reauthorization Act. We also urged Mr. Schiumo and Mr. Romney to encourage Senator McSally to join the Rare Disease Congressional Caucus. By doing this, Senator McSally can provide a stronger voice on Capitol Hill for her Arizona constituents living with or fighting for those with rare diseases. It was a great meeting filled with education and exchange of information. Our final Rare Across America meeting took place with Michelle Coldwell, Senator Sinema's Constituent Affairs Representative, and intern Ezekiel. During the meeting, we shared our rare stories, expressed gratitude for Senator Sinema's involvement in the Rare Disease Congressional Caucus and requested her staff ask her to cosponsor S.2158, the Newborn Screening Saves Lives Re-Authorization Act.

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