HB211 Passed the Utah House Unanimously!
HB211, establishing a Rare Disease Advisory Council, passed the Utah House of Representatives unanimously on Friday, February 15th, 2019!
Community members gathered to watch and listen from the gallery as Representative Lee Perry presented the bill to the full House of Representatives. Ava Szajnuk, our eleven-year-old daughter, was honored to have been asked by Representative Lee Perry to sit with him during his presentation to represent all rare and undiagnosed children in Utah.
Representative Lee Perry’s Presentation
Thank you Representative Lee Perry for sponsoring the bill. Thank you
Representative Steve Eliason for co-sponsoring the bill. Thank you to the entire House of Representatives!
& Justine Case
A special thank you to Stan, Jen and Talan Summers for being the motivation behind the bill.
Thank you to Justine Case of the Utah Rare Action Network for your collaboration with RUN.
with Jen & Justine
We look forward to working with Lorenzo Botto and everyone involved at the University of Utah Health.
February 11th, 2019: Ava and I were also both honored to support Representative Lee Perry by giving our public statements in support of the Rare Disease Advisory Council. It meant so much to our family to represent our rare and undiagnosed community.
Utah HB211: Ava & Gina Szajnuk’s Statements on February 11th, 2019
Collaboration is key to making the lives better for our rare and undiagnosed community here in Utah. More to come!
ABOUT RAN
The mission of the Rare Action Network ® (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States.
Contact Information:
Jennifer Summers, Utah Rare Action Network State Ambassador
Jennifer.summer@rareaction.org
Justine Case, Utah Rare Action Network State Ambassador
Justine.case@rareaction.org
ABOUT RUN
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
