CAL RARE Partners with RUN’s NBA Initiative: Golden State Warriors on April 5th!
The Golden State Warriors are hosted their first Rare Disease Awareness Night when they hosted the Cleveland Cavaliers on Friday, April 5th! #RUNNBA!
Thanks to the hard work by Angela Ramirez Holmes, RUN’s NBA Initiative has expanded to the Golden State Warriors! The awareness night is in partnership with California Action Link for Rare Diseases (CAL RARE), a non-profit organization dedicated to improving the lives of rare disease patients in California through outreach, awareness, and advocacy. Cal Rare will have a table in the concourse spreading awareness about rare diseases to Warriors fans.
Golden State Warriors game
March 31st, 2019
Four children with rare diseases will be taking the court with the Warriors before the game during the National Anthem. In addition, the Cleveland Cavaliers will be presenting the rare kiddos with a gift bag. Cavaliers owner, Dan Gilbert, has a son with a rare disease.
Cal Rare has sold 150 tickets to the game with a portion from each ticket benefiting their organization.
Learn More about RUN’s NBA Initiative with the Utah Jazz National Anthem Buddies on March 2nd, 2019!
ABOUT CAL RARE
CAL RARE is dedicated to improving the lives of rare disease patients in California. We are a coalition of rare disease stakeholders with a goal to raise awareness among the general public and decision makers regarding rare diseases. We want to bring recognition to the issues rare disease patients face and work to ensure access to physicians, treatments, and social services.
Our funding is based on membership. Memberships will be open to industry, academic institutions, associations, non-profits, and patient organizations.
Our primary activities are outreach, awareness, and advocacy.
Contact information:
Angela Ramirez Holmes
Founder/President
E: angela@calrare.org
Web: Calrare.org FB: Facebook.com/calrare Twitter: @calrare
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: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey
