Tis The Season for Action!


Kona wanted to make a special holiday appearance in honor of our call to action for the Senate over the 21st Century Cures initiative. I sincerely hope that when I arrive in DC in a few weeks, progress will have been made. There is no time to waste when 30 million Americans depend on Congress to take action.

My blog is a road map of my rare disease journey, starting last year when I decided to take a chance and use Rituxan off label. It is not approved for ITP patients. Why? Because we don’t have enough information and research on ITP to conduct a comprehensive clinical trial. One of my goals for 2016 is to change that. Through my research, I have been able to isolate a population of ITP patients who can and will benefit from use of the drug. Simply put, this drug is a life saver and the people who achieve remission from it enjoy a few years of a fairly normal life. There is absolutely no reason why this should be denied to people like myself.

Tomorrow is December 18th, which happens to be the one year anniversary of my remission. I truly believe this gift was bestowed upon me to give me a chance to fight for others. I have lost a few friends in the past year to ITP, it doesn’t get any easier and it makes me realize just how fortunate I am.

I’ve spent the last 365 building my new normal, now it is time to change medicine.

This isn’t About Passion


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

Five Things I Learned Living With ITP


September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it. Continue reading