What a great adventure!
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 »
We just returned from traveling to Washington DC. The driver of our trip was National Brain Tumor Society’s Head to the Hill, an advocacy event held every May. Basically it was meeting other brain tumor patients, care partners 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 recently listened to a Society of Neuro-Oncology podcast titled “IDH mutant gliomas; SNO consensus Review“. The podcast was basically a prompted question and answer session hosted by Dr. Ankush Bhatia with doctors Julie Miller, Nicolas Gonzalez Castro, Samuel McBrayer … 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 Susie being immune compromised, we’ve been careful as to what we do. Over the last two years we had not flown to visit friends or family, but we have had friends/ family come stay with us. Our youngest also … Read More »
With easier access to patient medical records, via online portals, and the ability to search terms and phrases in medical literature, I feel I’m inching closer to a better understanding of neurology, oncology and trauma of the brain. I don’t … Read More »
When Susie was diagnosed with recurrent brain cancer, a Secondary Glioblastoma (IDH1-mutant), we discussed her treatment options with her Neuro-Oncologist at MD Anderson Cancer Center. We looked at clinical trials, surgery and other options. Her case was brought before a … Read More »
Yesterday was Susie’s last day of physical therapy. It should have been a happy day, as she has progressed a lot in the last year. She is physically stronger, is more aware of her balance and now can continue with … Read More »
Masks have become a partisan badge one either does or does not support. There does not seem to be nuance in the discussion regarding the context and the participants involved. Some of the most vocal view this discussion as good … Read More »