OFFICIAL in Utah! Governor Herbert’s Declaration: Undiagnosed Disease Day is April 29th, 2016
The State of Utah will be the first in the history of the United States to declare April 29th, 2016, as Undiagnosed Disease Day. Currently, the Undiagnosed community falls under the umbrella of the Rare community and Rare Disease Day, on the last day of February. We had a very successful Utah Rare Disease Day this year and we were very thankful to Governor Herbert for declaring February 29th as Rare Disease Day in Utah. However, as a mother of three Undiagnosed children and Undiagnosed myself, the Rare and Undiagnosed Network felt that it was very important to raise awareness for all of the Undiagnosed patients currently living in the world of the unknown and in a Diagnostic Odyssey. #UndiagnosedDay
What does it really mean to be “Undiagnosed?”
To be undiagnosed is like being a child without a “home”.
Not a home in the physical sense, but in the sense of feeling you are without that one place in the world that provides the most comfort. The place that protects you from outside threats, keeps you warm inside, and gives you that safe, confident feeling you have when knowing all of your surroundings.
Millions of children and adults have what is called an “undiagnosed disease”, which is a “medical condition without a known cause despite great effort to research, discover, and identify the cause through extensive evaluation.”
Our children and loved ones deserve better. No child should be left undiagnosed and have to live without feeling comfortable, safe, and confident in knowing their surroundings inside and out. Every child and loved one not only deserves a diagnosis, but they need it – and time is of the essence.
So when someone asks you what “Undiagnosed” means, you can tell them to think about life without a home. Life without full comfort, full warmth, and full confidence in your surroundings.
Living “undiagnosed” is nothing more than living the unknown.
What is Undiagnosed Day?
Undiagnosed Disease Day is a special day where you can help make millions of children and adults as well as their loved ones living undiagnosed feel a great sense of comfort and confidence in knowing they are not alone in their search for answers.
Undiagnosed Day takes place on the last Friday of April each year with a single objective:
raise awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical and financial impact on the lives of the patients and their families.
The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed diseases and genetics.
Since 80% of rare and undiagnosed diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.
Help us raise awareness for Undiagnosed Day on April 29, 2016.
#UndiagnosedDay is the official hashtag.
Human and Molecular Genetics Center at MCW
National Organization of Rare Disorders
Nicholas Volker One in a Billion Foundation
Rare & Undiagnosed Network (RUN)
Smith Family Clinic for Genomic Medicine
About RUN
Our mission is to help families emotionally and financially living with a rare or undiagnosed disease. RUN gives families a voice by sharing their stories. RUN aspires to provide strategic and effective resources for support, diagnosis, and treatment of rare and undiagnosed diseases as well as to set the standard of care for all families on a diagnostic odyssey by making whole genome sequencing available to them through their insurance company.
Gina Szajnuk was born and raised in Madison, Wisconsin and moved to Salt Lake City, UT, where she serves as the Co-founder and Executive Director for the nonprofit Rare & Undiagnosed Network (RUN). Her three beautiful children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her as she fights for clinical whole genome sequencing to be covered by insurance companies. Gina is also undiagnosed. Gina is the Utah State Ambassador for NORD (National Organization for Rare Diseases). She is the Co-founder of the Undiagnosed Alliance as well as the Co-founder of RUNmyDNA, LLC. She served on the Executive Committee for Utah Rare 2015. She is the Committee Chair of Utah Rare for 2016. She is on the Program Committee for the National Ability Center. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison. She is married to the NBA Utah Jazz Assistant General Manager.
About the Undiagnosed Ribbon:
The Undiagnosed ribbon was created by Ava Szajnuk. Ava is eight years old and Undiagnosed. Since zebras represent the Rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it. We continue to be a part of the Rare community but we also stand alone. All rare diseases were once Undiagnosed.
For more information and stories about our Undiagnosed families visit RUN’s Blogs.
Please email gina@rareundiagnosed.org if you would like to join our Undiagnosed Alliance.
More information coming soon on the Undiagnosed Alliance.