Below are a few of the articles that you’ll be able to check out here:
- Why I wrote Chasing My Cure. I didn’t write it for myself. It’s for everyone that has ever struggled or suffered. It’s a story about hope.
- The different kinds of hope. Sometimes hope in someone else can prevent us from taking action. We should reflect on our hopes and prayers and then turn those hopes/prayers into concrete action. I had to stop hoping my disease would be cured (and stop believing that someone else, somewhere would do it) and start doing the work to get closer to a cure. Think it, do it.
- We are all in overtime. Life can be taken from us at any time–every second counts. I’ve considered myself in ‘overtime’ ever since I nearly died for the first time when I had my last rites read to me in 2010. After four relapses, I guess I’m now in my 5th overtime.
- We need to repurpose existing drugs for diseases without any treatments. Approximately 7,000 diseases don’t have a single FDA-approved therapy. We need to leverage the >1500 drugs already FDA approved for at least one condition to treat those 7,000 diseases that do not have any FDA approved drugs. Those drugs may already be cures or effective treatments for many of the diseases without treatments–they just haven’t been tried yet. My life is being saved by a kidney transplant rejection drug. How many other cures are already out there that haven’t been connected to the right disease?
- The biomedical research system is broken. Biomedical research progress is slowed mostly by non-scientific problems (e.g., how funding is distributed, lack of collaboration, data sharing). The traditional approach is based on random chance (we hope the right researcher with the right skill set conceptualizes the right study and applies for the right grant at the right time); it basically waits for the stars to align. We’ve created and pushed forward a new model where we build a community of physicians/researchers/patients, crowdsource the community to identify the right studies and then recruit the right researchers to do those studies. We align the stars by crowdsourcing research and pro-actively recruiting the best scientists to do the work.
- Doctor’s don’t know everything but that’s not the problem. The problem is that for many diseases (like Castleman disease), the medical community doesn’t know anything.
- It takes an army to make the kind of progress we’ve made.
- Humor is so important when facing life’s toughest challenges. I hope you’re never confused as your father’s pregnant wife. But if you are, I hope you find humor in that and all of life’s challenges. During difficult times, we can create silver linings. Despite the suffering my mom dealt with while battling cancer, she created positive memories for my sisters and I to have after she was gone. I’ve tried to create silver linings through creating the AMF support network for grieving college students in memory of my mom and fighting back against Castleman disease.