Friday, May 29, 2015
I just saw that registration for the American Brain Tumor Association (ABTA) has opened registration for their annual “National Patient & Family Conference” - http://hope.abta.org/site/TR?fr_id=3300&pg=entry
This is a great conference for victims, caregivers, friends and families. I’ve been, I’ve presented and I’ve listened. If you go, you’ll hear great personal stories of incredibly brave brain tumor survivors and gracious caregivers. You’ll also hear about the most recent treatment news and about protocols in testing.
You’ll meet doctors and scientists and folks who live and breathe the science and treatments on a daily basis.
The conference is July 24-July 25 at the Renaissance Chicago O’Hare Suites Hotel in the U.S.
Tuesday, May 26, 2015
On Terry Gross’ radio show today she interviewed British neurosurgeon Henry Marsh about brain surgery, the mystery of consciousness and dealing with triumphs and failures as a surgeon. He's the author of a new book entitled "Do No Harm." Here’s a link to the website: http://www.npr.org/programs/fresh-air/
Having been on the receiving end of brain surgery, I find it fascinating to candily hear what brain surgeons think about brain surgery: the challenges, the rewards, the fears and failures.
You should know that Marsh’s book - “Do No Harm: Stories of Life, Death, and Brain Surgery” - is nominated for a bunch of awards and has a 4.29 rating on Goodreads: https://www.goodreads.com/book/show/23014748-do-no-harm?from_search=true&search_version=service
I just put it on my “want to read list.”
PS - Strangely and prophetically , the motto/credo of the UMCOR Early Response Teams that follow first responders into areas whacked by natural disasters is also "Do No Harm." I can attest from my own experience with both that the emotional landscape of brain tumor-dom and natural disasters are remarkably similar.
Wednesday, May 20, 2015
I don’t like this picture, but is visually makes the point of a really good article that I just read by Julie Deardorff of the Chicago Tribune: http://www.philly.com/philly/health/sportsmedicine/Exercise_helps_the_body_but_the_brain_may_benefit_the_most.html#yfdOOJkrfWCMPKK5.01
The point being that while exercise helps the body (duh!) it just might help your brain even more. Ms. Deardorff says it this way “Exercise tones the legs, builds bigger biceps and strengthens the heart. But of all the body parts that benefit from a good workout, the brain may be the big winner.”
Deardorff summarizes a bag of research findings by noting that “Scientists used to believe the mind-body connection was a one-way street: The brain helped build a better physique — or else it sabotaged attempts to get to the gym. But scores of studies suggest that what’s good for the body also is nurturing the old noodle. Exercise, it turns out, can help improve cognition in ways that differ from mental brain-training games.”
Wait! Where’s the science behind all this?
Deardorff nails that saying “In the mid-1990s, Carl Cotman’s team at the University of California-Irvine first showed that exercise triggers the production of a protein called brain-derived neurotrophic factor, or BDNF, which helps support the growth of existing brain cells and the development of new ones.” Her article goes on to cite other studies and scientists.
Interested? Read more at http://www.philly.com/philly/health/sportsmedicine/Exercise_helps_the_body_but_the_brain_may_benefit_the_most.html#yfdOOJkrfWCMPKK5.01
Monday, May 4, 2015
The following is mostly a repeat of my April 18th, 2012 blog posting. As I’ve previously written, I’m repeating it because I just can’t write a more passionate posting.
Earlier this week I got an email from Ms. Bonnie Culbertson on behalf of the CERN Foundation asking me to promote the Ependymoma Awareness Day which is tomorrow, April 19th.
My first reaction was “What is Ependymoma?” While I don’t claim to be a brain tumor expert, I do feel like I know a bit more than the average mope about brain tumors: I’ve had a brain tumor, I write about brain tumors, and people write me about brain tumors.
So I opened up Mozilla and went to my trusty ABTA bookmark to learn at least something about Ependymoma.
According to the ABTA, “Ependymoma is a rare type of primary brain or spinal cord tumor. Primary brain and spinal cord tumors are a type of tumor that starts in the central nervous system (CNS).
I didn’t like the sound of that. My Meningioma never penetrated my CNS (that I know of). Ependymoma starts there…which can’t be good.
Then I read that “These are relatively rare tumors, accounting for 2-3% of all primary tumors.” Well that explained why I hadn’t heard of it. I’ll also bet that, because it’s rare, Ependymoma gets less than its fair share of research dollars
The ABTA article went on to say “However, they (i.e. Ependymoma) are the most common brain tumor in children. About one-third of pediatric brain tumors are diagnosed in children under the age of three.”
Argghh, that fact hit me right in the emotional soft spot. I hate it when small children suffer. I remember waiting in the surgical staging area for a craniectomy when two parents brought a scared little girl in for surgery. She was spooked by the gowns, the strange people wearing masks and the strange place. I don’t blame her; I was spooked by the same things. Her mother and father struggled to calm her down as they put the gas mask on her face. Her terrifying cries still haunt me a bit today.
So as you may guess, I wanted to know how the CERN Foundation was going to creatively and memorably build awareness about Ependymoma Awareness Day. I was thinking skywriting, interviews on Good Morning America or maybe an email blast (or as I first spelled it, “blash.”)
Then I remembered that this is a rare form of brain tumor and they probably have a similarly “rare” budget. So instead of an email blast, or even a blash, I was expecting a small email “pop.”
Not surprisingly, they were way ahead of me. According to their website, the “CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place during the semi-annual CERN investigator meeting on April 19, 2012…The butterfly release will be streamed on the internet so that supporters around the world can participate and share in this event “
Well now, that’s kinda cool, so I bought one. I plan to be watching the release tomorrow and, hopefully, picking out my butterfly. (Personally, I think Blue Morpho butterflies are the prettiest.)
Here’s the link to the CERN Foundation website where you, too, can buy a butterfly: http://www.cern-foundation.org/
And if you're a Blue Morpho fan, here's a link to a nice picture of one: