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 … [Read more...] about ARTICLE: From Rare Diagnosis to Fierce Advocacy
Personal
Thank you Henri Termeer
It seems that almost everyone in the rare disease community has a personal story about Henri Termeer. Here is mine -- A few years ago at the Global Genes gala, my husband (Robert Ostrea, MBA) and I were seated at Henri Termeer's table because of our connection to the Gaucher community. I will … [Read more...] about Thank you Henri Termeer
Bringing Rare Disease to Stanford University’s #MedX
I'll be honest. I had no idea what to expect when I was headed to MedX this weekend. What I did know is that an abstract that my rare friends and I put together was accepted, and we were to present it at Stanford University's MedX Program. Me. A rare mom. Talking about Hannah, Gaucher Disease, … [Read more...] about Bringing Rare Disease to Stanford University’s #MedX
Hope, Loss, and Survival
Our Little Miss Hannah Foundation hosted our first annual Vegas Cares About Rare Kids 5K on February 25, 2017. It was an amazing success not only by the turnout of over 500 people in attendance, but by the opportunity to introduce our community to 21 rare kids in our area. Our Little Miss Hannah … [Read more...] about Hope, Loss, and Survival
Sisterhood of the Traveling Advocates
Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates
My Passion for Advocacy
One of the most fulfilling things for me since Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community. I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of … [Read more...] about My Passion for Advocacy
