Rare Disease Week on Capitol Hill

For 2 days in July, T.E.A.M. 4 Travis Board Members Gena McFarland and Allison Bones shared Travis' story and our passion for the Rare Disease community by meeting with staffers from Representatives Tom O'Halleran, Anne Kirkpatrick, Raul Grijalva, David Schweikert and Greg Stanton, as well as Senators Kyrsten Sinema and Mark Kelly. For us, the most important piece of legislation is the Newborn Screening Saves Lives Act (S.B. 350), as it provides for extensive funding to support critically important education, awareness and life-saving diagnostics. We do this in Travis' memory, for if someone had been able to detect he was born without a spleen, it's likely he would still be alive. We're grateful to Krista Rosenthall in Senator Sinema's office for asking the senator to be a co-sponsor for this bill, and her continued role as a champion for the Rare Disease Community in Arizona. We also met Kelsey Mishkin in Congressman Grijalva's office and were thrilled to know the Congressman will renew his membership in the Rare Disease Congressional Caucus as well as co-sponsor the Access to Genetic Counselor Services Act (HR 2144) and the Medical Nutrition Equity Act (HR 3783).