This morning I received my usual TED talk email and was literally brought to tears watching the TED presentation by Nancy Frates, the mother of Pete Frates, who came down with ALS a couple of years ago. It was Pete and Nancy and their family who put together the ALS campaign that included the ALS Ice Bucket Challenge. It then became a smash hit this past Summer. In her TED talk, Nancy details how it all began with Pete’s diagnosis, Pete saying he wanted to get this in front of philanthropists such as Bill Gates, and to dividing up the various responsibilities of their campaign.
I earlier wrote about the ALS Ice Bucket Challenge fundraising campaign as it was becoming a Summer sensation. My interest is partly in that I’ve been involved in fundraising, but more out of my personal interests and challenges in living with the disorder, hydrocephalus, since 1992. The effects from my hydrocephalus have been considerable. I lost all of my work and related skills after an auto accident that caused it. And it took 16 years, 7 surgeries, and much of my own making to finally get a CNS shunt to do what they are supposed to do – properly clear CSF fluid & pressure from my brain. Out of survival, like the Frates did, I became involved in advocacy for hydrocephalus, and this led me to efforts with the Food & Drug Administration (FDA) and their oversight of problems with CNS shunts, which are the medical devices principally used in the treatment of hydrocephalus. In 1996, I learned of a leading CNS shunt having specific problems that I suspected was connected to my poor health, and I reported this to the Food & Drug Administration. Then I learned it was likely responsible for thousands of additional surgeries and poor outcomes over 10 plus years. Some in the field knew about this, but nothing was done to change it. So I petitioned the FDA. It took me over a year to gather the studies and assemble it all. And I did this all in spite of considerable health & cognitive challenges.
In 1998, FDA upheld this petition. But what followed was dishonest and troubling, and led to many of the ongoing failures in CNS shunt safety and progress in hydrocephalus care. Yet in 1997, in the two-year interim period it took for FDA to issue a ruling on my petition, I designed & patented a home software method to monitor hydrocephalus (the DiaCeph Test) and address many of these CNS shunt issues. It was a program to run on a custom PDA device. I presented it at the 1999 STAMP Conference in Bethesda, MD. But FDA, and much of the medical industry, scoffed at my efforts. Some of this correspondence is still on my main web site. At that time, few neurosurgeons believed in collecting & sharing medical data on PDAs or over the Internet. I suspect their sentiments are different today. I was also outspoken on the need for progress in hydrocephalus care. And it led to the Hydrocephalus Association, several partnering shunt manufacturers, and their key board neurosurgeons, “blackballing” me of sorts in the field. I was responsible for the 1999 STAMP Conference. But I ceased much of my advocacy after this, and by 2003 had moved on to other interests in the neurosciences. Meanwhile, shunt after shunt after shunt was introduced with problems, including, my current Certas valve which was recalled last year. My 1997 design of the DiaCeph Test would have been one of the earliest mobile apps. Today, it sits on a shelf.
Now when you watch Nancy Frates’ TED talk, you can see her passion, and hear her talk about confronting complacency, and poor colaboration on ALS research. She also instituted an “action plan” right from the start. I also earlier wrote about the ALS Ice Bucket Challenge, and cited the amazing efforts by Christopher Reeve on behalf of spinal cord injury. And there is one very very important element of their respective campaigns: THEY DID NOT COZY UP TO INDUSTRY & COW TOW TO THEIR WHIMS! They told it the way it was, engaged the masses, and industry then followed their lead.
So for those of you who truly want to bring progress to the care & treatment of hydrocephalus, stop cow-towing to industry and be unique and create your own fundraising and awareness campaigns. For me, last year I created the cool site http://www.HydroPowered.org for sharing fun & art on hydrocephalus, and for fundraising when the opportunity presents. Be unique, sincere, passionate, and organized.
Enjoy Nancy Frates TED talk.