HB435: Undiagnosed Children Insurance Coverage Bill Passed!
“A bill that I informally named “Marley & Tyler’s Bill” passed yesterday! It will help provide coverage to undiagnosed children. My recently diagnosed daughter and a boy named Tyler, that was helped through this program, came to testify for the bill. Though they are both non-verbal they helped get it through the process unanimously! Thanks Senator Gregg Buxton, August Teuscher, Representative Mike Schultz, Lorenzo Botto and to my Wife, daughter and Tyler.” – Representative Steve Eliason
March 13th, 2019
HB435, Undiagnosed Children Insurance Coverage Bill, requires the state Medicaid program and Public Employees’ Benefit and Insurance Program to cover exome sequence (WES) testing. This bill will truly make a difference in the diagnostic odyssey for many in our community.
“Tyler, Noah & I had the most amazing privilege of being invited to testify in support of a House Bill for undiagnosed children insurance coverage amendments to require insurance companies to pay for whole exome sequencing. One in a Million was shown at this committee. Can I just say my heart swells with gratitude to Dr. Lorenzo Botto, the University of Utah, The Penelope Program and all who were involved in this beautiful process. And a very special thank you to Representative Steve Eliason for sponsoring the bill!” – August Teuscher
About One in a Million
A special thank you to Dr. Lorenzo Botto, the entire team in The Penelope Project and the University of Utah Health for your continued support of our family, the Teuscher family and all of the families suffering in a diagnostic odyssey and living in the world of the unknown. We truly appreciate your hard work and dedication to our community.
University of Utah Health is proud to present One in a Million, an original short documentary. To learn more and to support rare and undiagnosed disease research, visit oneinamillion.uofuhealth.org. The film tells the story of Tyler, who lost his ability to walk, see, and hear by the time he was 10. The cause remained a mystery until U of U Health scientists searched his DNA for clues. What they found led to a discovery that changed the life of one remarkable boy. One in a Million was directed by acclaimed independent filmmakers Ross Kauffman and Jeremiah Zagar and co-produced by executive directors Geralyn Dreyfous and the Kahlert Foundation. The movie premiered at a U of U Health-sponsored panel during the 2019 Sundance Film Festival.
The Szajnuk family in April, 2018.
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: The Szajnuk Journey
Learn more about #UndiagnosedDay on April 29th
