Thank you Coriell Institute for Medical Research for sharing our family’s story and why we are so passionate about working towards change in our #raredisease community! “Advocacy can give patient families – families who have been dealt an often life-changing diagnosis – an opportunity to take charge of their situation, participate in research, and focus…
2018 Vegas Cares About Rare Event Success!
Our Vegas Cares About Rare Kids 5K this weekend was just amazing! We were excited to see so many people in our community come out to support our organization and meet our 20+ VIP kids. We are tallying final numbers and we will be sharing our recap update and photos from the event soon. We…
Vegas Cares About Rare Kids 5K on CBS 8 Las Vegas
Thank you 8 News Now and Kirsten Joyce for having Robert Ostrea, Nick Krshul, and Bradley on your show last week. We appreciate all of the support you continue to show our organization and special kids like Bradley with rare and medically complex conditions! Click here to view the video.
Three Students to be Awarded Hannah Ostrea Memorial College Scholarships
We are excited to announce that we will be awarding three local students the $1000 Hannah Ostrea Memorial College Scholarship at our Vegas Cares About Rare Kids 5K on 2/18/2018! We were touched and amazed by the quality of this year’s applicants and their essays they shared about being a sibling affected by childhood rare…
Article: Steps to Take After Receiving a Rare Diagnosis
As a rare parent advocate, one of the questions I get asked most by newly diagnosed families is “What do I do next? How will I manage this?” My good friend and colleague, Anne Bruns, and I co-authored this article for Exceptional Parents Magazine’s annual “Navigating Special Needs Resources” magazine tackling just this topic. Click…