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 admit being…
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Remembering our LMHF child, Brian
Written by Isela Garcia, Brian’s mom Brian Salvador Garcia was born August 20th, 2001. At the age of 3 months he had his first seizure and his fight began from there. As he got older, he was diagnosed with Lennox Gastaut Syndrome. With time, we as parents constantly traveled with Brian in search of treatments to…
Woman to Run Las Vegas Area Half Marathon in 50-State Quest to Fight Rare Disease
Effort Honors Henderson Charity, Little Miss Hannah Foundation, and Charlotte Charity, Taylor’s Tale CHARLOTTE, N.C. – Taylor King, 18, ran two 5K races after losing her vision to a rare, fatal condition called infantile Batten disease. Now her older sister, Laura King Edwards, is running in all 50 states to honor her and support one…
Rare Disease Week 2017
Reprinted from Linked-In The last day of February is designated internationally as World Rare Disease Day and organizations representing patients and advocates dealing with rare diseases come together to raise awareness through local events and activities. Additionally, each year in the United States, hundreds of rare disease advocates convene in Washington, D.C. to meet with…
2017 Vegas Rare 5K photos are up!
Photos from our 5K event have been posted on Facebook. Tag yourself if you see yourself! Thank you for joining us to help celebrate our local rare kids and create awareness for childhood rare diseases on World Rare Disease Day. Event photos | Step and Repeat photos Save the date for next year –…