This isn’t About Passion

AwareRare

In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studiesContinue reading

Rare Disease Advocacy Gone Astray

I’ve been rare for about 14 months now, enough time to start noticing things within the space that aren’t so fabulous. I’m pretty disgusted by the actions of a few people and organizations that are treating rare disease advocacy as some sort of popularity contest.

News flash: If you’re popular with fellow rare disease advocates, you’re doing it wrong!

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How Washington Can Change Rare Disease: Part Three

laid-offWhen I was diagnosed last May with ITP, I had no idea I was about to be tossed out of my job by my employer. When I was hospitalized, I wrongly assumed that the company I worked so hard for would back me up. So when I was laid off, I felt like my world was crumbling around me. How would I pay my bills? What about my health insurance? Could I qualify for disability? There were few real answers for me. Continue reading

How Washington Can Change Rare Disease: Part One

STEM-logo

This is the first of a four part series leading up to my trip to Washington DC for Rare Disease Week. I want to highlight some issues in the rare disease community with regards to STEM education in the United States and how it can impact our lives. It is obvious to say that scientists, engineers, mathematicians and technology experts are important for our country. However, they are vital to the rare disease community, and we need to encourage people to explore STEM related occupations. Continue reading