Written by Griffin Becker, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. When my sister was first diagnosed nearly a decade ago, there was virtually no support in Southern Nevada. There wasn’t even a pediatric rheumatologist in town to treat her. I think connecting parents, children, health care providers, advocates,…
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2018 Scholarship Winner Essay – Jasmin Garcia
Written by Jasmin Garcia, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. To this day, I cannot remember a time in my life that our lives did not revolve around my brother Brian. I was only three years old when he was born so I can’t say that I…
2018 Scholarship Winner Essay – Chloe Davis
Written by Chloe Davis, 2018 Awardee of the Hannah Ostrea Memorial College Scholarship for siblings affected by childhood rare disease. When my sister was 7 years old, she sat down one day and wrote a list she called “48 Ways to serve people, friends, and family”. This list included acts of service that Lexi saw…
ARTICLE: From Rare Diagnosis to Fierce Advocacy
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…
My Rare Disease Week in Washington DC 2018
This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was chosen since February is the only month with 28 or 29…