What a great adventure!
For the past few years, my involvement in two brain cancer registries and serving on their Research Advisory Boards has been a fulfilling experience. However, recent changes in the healthcare landscape, such as the spinoff of Watson Health from IBM … Read More »
I’ve participated in multiple Head to the Hill events, both remotely and now in-person. This National Brain Tumor Society event directs patients, care partners and advocates to meet with US Congressional Representatives and Senators to encourage better funding of brain … Read More »
In my recent blogpost, I discussed my participation in a Quality of Life Roundtable centered around brain tumor patients. The roundtable included healthcare professionals from institutions like the NIH/NCI and tertiary cancer hospitals, as well as patients, caregivers, and advocates. … Read More »
With my involvement in the Low Grade Glioma Registry and Count Me In Brain Tumor Project, I think we are at the beginning of the precision medicine journey. I am seeing multiple similar endeavors that are looking at rare diseases … Read More »
A couple of weeks ago I authored a blog post on downloading demographic and diagnosis content for IDH1 mutant gliomas, also known as Low Grade Glioma, from the NCI Genomic Data Commons (GDC) website portal. The portal supports downloading this … Read More »
I was chatting last week with an acquaintance. He asked me why I was volunteering with the Low Grade Glioma Registry. I explained about Susie’s type of brain cancer and that the clinical and genomic data available to the public … Read More »
I have been participating for much of this year, representing the viewpoint of a brain cancer care partner, in the Low Grade Glioma Registry’s OPTIMUM research initiative. A couple of months ago I learned this initiative was part of the … Read More »
With my work, I often interact with Physicians, Hospitals and Life Sciences companies. Seldom do my discussions center around brain cancer, but I often think about how whatever I am doing could be applied to cancer patients like Susie and … Read More »
I recently received an email from Count Me In’s Brain Tumor Project, previously called the “Brain Cancer Project.” Susie and I participated in the launching of the effort with other patients, advocates and the Broad Institute. In addition to volunteering, … Read More »
This blog post is part of my Capstone Project for the IBM Data Science Professional Certification, offered via Coursera. I specifically documented some of the challenges and twists and turns that a lay person might encounter digging into publicly available … Read More »
Back in April, I wrote a blog post titled Corona Virus Observations. The post was really a back of the napkin analysis of US versus EU daily case and mortality rates. It showed the US case rates were higher than … Read More »
I’ve seen quite a few charts and graphs comparing the US to different countries. Some of these countries have much smaller populations and different demographics. This is especially the case when looking at countries in Europe. Some countries are more … Read More »
Recently, I experienced a twitter shaming attack from an account whose description is “PROUD MUSLIM. LIVERPOOL! BOXING! @LFC #FreePalestine #FreeSyria #Humanity”. His tweet was “@IBM this guy that represents you likes people starving to death, and thinks PALESTINE are terrorists“. … Read More »