This article was my “Thank You” write-up from the 2016 TeamCindy fundraisAlcatraz following that year’s Brain Aneurysm Foundation Research Symposium
We are targeting a $50,000 fundraise for the Brain Aneurysm Foundation and its critical, under-funded work dedicated to providing critical awareness, education, support, and research funding to reduce the incidence of brain aneurysms.
It’s personally important for me to share how my friends and family contributing supporting know where their money goes, and so I hope you enjoy this write-up of our 2016 grant. And you can learn a little more about this issue along the way…
The 2016 Brain Aneurysm Foundation Annual Research Symposium included my presentation of the Team Cindy Alcatraz Research Chair for 2016.
This research award was entirely funded by the 2016 donations for TeamCindy in the 2016 Escape from Alcatraz triathlon. Being in Atlanta for the Research Symposium ceremony was a moving, educative experience in which I met with researchers, aneurysm survivors, and the staff and the Board of the Brain Aneurysm Foundation.
The TeamCindy 2016 Escape From Alcatraz Research Chair — Dr. Matthew Alexander’s work
Dr. Alexander is researching the genetic signs that can help predict individuals that are likely to develop aneurysms, and which aneurysms are likely to rupture.
To date, genetic studies on aneurysms have not been conclusive but technology has advanced considerably. A person’s entire DNA can now be sequenced quickly, though it is still expensive.
Dr. Alexander (Matt) educated me a little on how there are methods that look at small stretches of DNA over thousands of locations throughout the human genome. This can be performed for much lower prices and yield results of comparable quality to the expensive sequencing. Matt and his colleagues are adapting genome wide association studies (GWAS) to look for interaction with things like inflammation and cardiovascular disease. As it is becoming clear that there is no single “aneurysm gene,” this next generation of GWAS research can hopefully shed light on how genes lead to aneurysms.
Dr. Alexander explained that at University of California, San Francisco UCSF, blood samples are banked from over 500 patients with aneurysms that have been waiting for this kind of analysis. Our grant will be getting this work going. Based on the data obtained, Dr. Alexander hopes to then obtain further funding for prospective genetics studies across multiple centers with high volumes of aneurysm patients.
It was a nice pairing by the Brain Aneurysm Foundation to grant the Team Cindy Alcatraz award to a local recipient. We are going to introduce Dr. Alexander to the 2017 team, I hope, in the build up to our 2017 race…
The Beatles were backers too…
A highlight of the Symposium was a brilliant keynote speech from Dr. Daniel Barrow, the Chief Neurosurgeon at Emory University Hospital, Atlanta
Mid-way in his potted history of neurology — the “youngest surgical discipline” — Dr. Barrow went multi-media…and explained the link to the Beatles.
Back in 1971, the Beatles’ EMI record label profits were partly directed into the development of the first CT scanner by Godfrey Hounsfield, an electrical engineer at EMI who was working on weapon systems and radar within the company — other divisions of EMI the record label, back then. You can read more about Godfrey Hounsfield, the Beatles link and his nobel prize in this article— it was fascinating to learn!
Survivor’s Tale
A survivor then took to the podium, sharing his close brush with death after collapsing in a business meeting
Jim Fitzpatrick is a former businessman that had been visiting Atlanta and had a rupture in a key negotiating meeting. I talked to him more about it afterwards — he spoke of how he remembered nothing of that day and joked as to how his collapse then helped the negotiation. More seriously, he spoke of his gratitude to be alive, but the years of depression and physical challenges in the aftermath. And just how impactful to his life the Brain Aneurysm Foundation has been in the after-support, through their network of support groups (now 70 — all US). Jim is a regular dropping into the Boston HQ of the Brain Aneurysm Foundation.
The research symposium is an eye-opening evening, sitting with and hearing from survivors of the trauma, physical and psychological challenges left behind from a brain aneurysm rupture — for those lucky to survive.
And being reminded of the sobering statistic — that 40% of us don’t make it — when aneurysms rupture. This a disease that creates a victim every 18 minutes — with 15% of us thought to have a genetic pre-disposition. I share links for more information at the bottom…
Why do I do it?
Brain aneurysms are an underfunded, silent killer with a particular weakness in health systems in the after-care. Check out this pictogram showing just how low brain aneurysm funding is relative to other areas. Each year, this campaign helps keep me grateful for a fully-functioning brain and set of limbs. And reminds me of those that have fallen young to brain aneurysms.
You know a “snap shot” memory? When something from deep in the past remains Kodachrome-clear in your mind, a photograph of a moment, a snapshot of where you were when something happened, in a conversation that you never forgot or an incident. One of mine goes back to 1993, when I opened a door to the room of a housemate in my boarding school on a Sunday evening. Warren was lying on the floor unconscious. He did not return.
TeamCindy and the Brain Aneurysm Foundation are so grateful for you saying “yes” and clicking to contribute to this year’s campaign [INSERT LINK].
We know that inboxes are a noisy place.
And I am grateful. Now go move your body and be grateful for your brain’s healthy function too…!
P.S. Update on our 2015 TeamCindy Alcatraz Research Grant…
In particular to share with those 2015 supporters…I met Vince Tutino at the 2016 Research Symposium who travelled in place of the award recipient Dr. Hui Meng.
TeamCindy and the Brain Aneurysm Foundation are so grateful for you saying “yes” and clicking to contribute to this year’s campaign [INSERT LINK]. It was fantastic to be able to catch up with Vince to hear about progress with last year’s Team Cindy Escape from Alcatraz Research Chair — (as illustrated in the Summary Award boards to the left, please email me if you would like more detail).
Vince works with Dr. Hui Meng on the development of blood-based biomarkers to develop cost-accessible blood testing for risk assessment and treatment planning. Vince updated me on progress in the validation of neutrophil (white blood cell) markers that can be applied in whole blood testing to allow routine testing (i.e. at your doctor) within blood panels. Vince and Dr. Meng’s work is under review for publication in Nature journal, and of Vince’s co-founding of a company to commercialize the method.
Again, learn more…
