One Mind for Research: A 10 Year International Campaign for Brain Disease Cures

Alvaro Fernandez, CEO of SharpBrains, recently sent me an email blast and described One Mind for Research as “…an independent, non-profit organization bringing together health care providers, researchers, academics and the health care industry on a global scale with the goal to rapidly develop new treatments and cures for all illnesses and disorders of the brain.”

Yes, that seems like a tall order, but it also sounds like something Daniel Burnham would say, so I Googled One Mind for Research and found this on the front page of their website:

http://www.youtube.com/watch?v=yWCAV3jUQiE#t=125

“THE PROBLEM     

Brain disorders affect more than 60 million Americans—that is more than one in four Americans suffering from mental illness or brain injury. From Autism and Alzheimer’s disease to Traumatic Brain Injury (TBI) and Post-Traumatic Stress (PTS), brain ailments cost the U.S. close to $1 trillion each year.  Insufficient funding for research, slowness in developing new, effective treatments, and the extreme social stigma associated with brain disease and injury result in this being the BIGGEST CHALLENGE TO HEALTH CARE 

TODAY. Cancer and heart disease affect far fewer people, yet receive three to five times more funding support than brain diseases.

THE SOLUTION
A revolutionary change in the way brain research is funded, combining private philanthropy, government funding, and corporate investment with policy improvement that accelerate the research-to-cure time frame exponentially. This is the mission of ONE MIND.”

Great stuff, efforts that will help everybody and anybody impacted by brain issues: from brain diseases to brain injuries. Here’s a link to their website to learn more: http://1mind4research.org/

Giffords Resigns from Office…But Not from Life

I’ve just watched the Gabrielle Giffords video posted on her website - http://www.gabriellegiffords.com/ - and I have two diametrically opposed thoughts about it.

First, she seems to have come to terms with her handicaps in that she acknowledges the severity of them and limitations she has.  That’s a good thing. After a traumatic brain injury or brain tumor, we are changed and usually for the worse. And if you shouldn’t drive or cook or manage the high-stress and important job you used to have, you need to acknowledge that handicap. Her resignation tells me that she has. 

It’s hard.

It’s humiliating.

It’s depressing.

But pretending that you can see as well as you used to, when you can’t, is in some ways a lie.  And, to quote Richard Bach (author of Jonathon Livingston Seagull), “the worse lies are the lies you tell yourself”.

At the same time, she has not resigned herself to being anything less than she can be. Her objective seems clear – she wants to return to work as a congresswoman for the state of Arizona. And to do that, she needs to spend 100% of her time in rehab. Will she be able to recover to the point that she’ll be able to run for office?  Who knows? Having read her book - Gabby: A Story of Courage and Hope - I wouldn’t bet against her.  (Here’s link to her book: http://www.amazon.com/Gabby-Story-Courage-Gabrielle-Giffords/dp/1451661061/ref=sr_1_1?s=books&ie=UTF8&qid=1327341870&sr=1-1)

For those of us who’ve had brain tumors or traumatic brain injuries, she’s the role model. She’s the one we can all know and say to ourselves “If she can come back from a bullet to the head, I can come back from my brain tumor.” “Come back” may mean different thanks to different people, but to me it means never giving up and, like the army ad, “being all I can be”.

And just as importantly, it means never letting the tumor consume your life, your personality, or your attitude.

Almost every time I go to the gym I see a guy from church who’s in an endless cycle of rehab. Every time I ask him how’s he’s doing, he gives me a laundry list of his latest illness woes…and then walks away. His illness consumes him and imprisons him. What is so refreshing and motivating and inspiring about Gabby – or at the piece of Gabby that we can see – is that she hasn’t fallen into that trap.

I hope I never do too.

He nailed it…his head. No, really, his own head.

According to an article in today’s Chicago Tribune, on Tuesday Dante Autullo, who lives in the Chicago area, shot a nail into his own head with a nail gun.

And that’s not the weird part.

The weird part is that he didn’t go to the hospital until 36 hours later because it really didn’t hurt that bad. Which is really weird when you look at the X-ray (see picture).

According to the article, “The point of the nail entered cleanly without sending fragments of bone into the delicate tissue of the brain. The flat head of the nail kept it from penetrating too deeply and held it in place securely, just as if it had been driven into a two-by-four, Schaffer said. During a two-hour operation, he drilled two holes on opposite sides of the nail head and lifted out a small piece of bone with the nail stuck in it.

The portion of the brain the nail struck, on the upper right side in the back of Autullo's head, controls some motor functions, but because he has so far showed no side effects, he probably won't,” said the operating doctor from Advocate Christ Medical Center.

I’m not sure what to make of this. I read horrific stories in blogs about victims of brain tumors and traumatic brain injuries who did nothing foolish or silly and yet wound up with a debilitating disease or handicap.  And then this mope shoots a 3 ½ inch nail into his own head and nothing happens to him.

To quote Steve McCroskey, it “Looks like I picked the wrong week to quit drinking.”

Here's a link to the article: http://articles.chicagotribune.com/2012-01-20/news/ct-met-nail-in-the-head-0121-20120121_1_nail-gun-brain-tissue-schaffer

The Gabby Giffords Book Review

I read this book for two reasons. First, it’s a great story survival story of recovering from a gunshot wound to the head. Secondly, I feel that I have some kind of psychic connection with Gabby as we both have had significant pieces of our skulls surgically removed, albeit for different reasons, at very similar times.  And then we both had our cranioplaties - insertion of a prosthetic skull - performed the same week.

I am happy to report that the book works on many levels. It's an interesting story of the lives of two highly accomplished individuals - Congresswoman Giffords and Astronaut Mark Kelly. And it’s also an honest portrayal of the trials of rehab and recovery.

The book makes it clear that Gabby's injuries were horrifically acute, and her recovery has been slow and painful. It reports that she has lost 50% of her vision; that her right hand and arm are less than functional; that she wears a brace; and that she has continues to undergo rehab for aphasia (an impairment of language ability). Here’s a link to her Diane Sawyer interview which gives a good sense of her aphasia: http://www.youtube.com/watch?v=yqH5v-VVp28

Given where she started from, her recovery is nothing but miraculous.

At times I yearned for a bit more about Gabby and a bit less about Mark, but she's not really ready to talk or write much. And it’s clear that he loves her as you can see from this U2 video: http://www.youtube.com/watch?v=9ydz5-ecdpg

Importantly, the emotional storyline feels real and heartfelt. Said differently, if you don’t at least mentally tear up during some section of the book, it’s time to get your oil checked, because you’re not human.