Rare Disease Research and Funding

22 May

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 »

Merging Clinical Trial and Real-World Data

19 May

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 »

Precision Medicine Path

14 Apr

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 »

Brain Tumor Project Update

23 Mar

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 »

Corona Virus Observations

11 Apr

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 »

My Experience w/ a Twitter Troll

19 Apr

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 »