Wed, Mar 03 | Zoom Meetings

Rare Across America 2021

We shared Travis' story with Federal Legislators, including staffers from Senators Sinema and Kelly as well as four US Representatives.
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Time & Location

Mar 03, 10:00 AM – Mar 04, 3:00 PM
Zoom Meetings

About the Event

During Rare Across America, T.E.A.M. 4 Travis Board Member Gena McFarland and Founder Allison (D'Ambrosio) Bones joined with fellow Arizona Rare Disease patients and caregivers to advocate to staffers from the offices of Senator Sinema, Senator Kelly, Representatives O'Halleran, Gosar, Schweikert and Lesko. We shared our stories of what it's like to live with rare disease or love someone rare, educating the staff about some of the most critical concerns of the rare disease community. Senator Sinema and Representatives O'Halleran and Lesko serve on the Rare Disease Congressional Caucus. This year, thanks to info provided by Legislative Assistant Will Stechschulte, we can count on Representative Gosar joining the caucus as well.

We also had great dialogue with Krista Rosenthall (Kyrsten Sinema's Health Policy Fellow), Adam Finkel (Tom O'Halleran's Legislative Director), and Chad Michaels (David Schweikert's Senior Legislative Assistant) and secured support for the latest version of the Newborn Screening Saves Lives Reauthorization Act (H.R. 482/S. 350). 

We continue to grow our relationship with Debbie Lesko's office, speaking with Legislative Aid Johnny Zwaanstra about Newborn Screening and other bills currently pending in Congress. Sydney Pearson of Mark Kelly's office was brand new to the rare disease community, so we're hopeful to resource for questions she may have about our Legislative asks.

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