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.
In 2013, I obtained the HydroPowered.orgdomain and created a basic web site for sharing of fun, art, and culture on a technology platform for individuals and families affected by hydrocephalus. The image at top was created from one of my MRI brain scans, with editing from the Pic Say Pro app. I then added a tribute to Godfrey Houndsfield for his engineering vision, and EMI Labs(a division of EMI Records), for funding his project that led to the invention of the CT scanner– arguably the greatest medical invention we have to date.
I do all of this on a shoe-string budget. Still, I feel I could offer those affected by hydrocephalus a new and fun way to connect on art and fun topics.
I acquired the HydroPowered.orgweb site by researching domains that were available with the word “hydro,” short for hydrocephalus, which means water on the brain.
I created the above “blue swirl” image as my first logo from one of my MRI brain scans using the Pic Say Pro mobile app. Then, on my web site and Facebook group, I added additional art with the water or “hydro” theme, including, the Schick Hydro razor. The links below go to my web site and Facebook pages of “hydro” art.
I am hoping to create fun and cool art for hydrocephalus, separate from the disabiling realities of the condition. This came together one evening in May 2013, though my original idea started back at a hydrocephalus conference in the year 2000. Since 2013, I’ve added HydroPowered art and super-hero stories, and am looking to add more stories and characters.
I want to expand on the “super-hero” theme. I’ve written a few tie-in super hero stories on HydroPowered.org. I actually envision a series of HydroPowered super hero characters. I’ve also created a Facebook Fan Page so other “hydros” (that’s a term we often call each other) can post/share their art and stories.
I continue to brain storm ideas to get this out to the masses without having to spend a lot of money or time. I have made custom T-shirts and polo shirts at Vistaprint online. I’d even be willing to try a “daring PR stunt” if that would bring awareness to this cause.
On Thursday Sept. 24, 2015, I along with HydroPowered.org will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.
In addition, I am trying to put together a “Drum-off for Hydrocephalus” to help raise awareness and funding for hydrocephalus.
In July 2015, I put together a photo collage with my NFL lookalike, JJ Watt, of the Houston Texans. Check out the similarities below of JJ to my photos at his age.
I am hoping this look-alike photo collage might create some social network interest in this cause. It was two years ago that I realized JJ & I look alike like. And he seems a lot like me too, with both of us growing up in the Mid-West. So, for Throwback Thursday, I put together this photo collage, and put it on several of the social platforms, hoping to bring attention to hydrocephalus and my efforts with HydroPowered.
Since 1985, I’ve provided quite a bit of outreach & CSR to Orange County area organizations. During the 1980s, my outreach and fundraising efforts were in little baseball, AYSO soccer, the Costa Mesa Chamber of Commerce, Hoag Memorial Hospital, community theatre, and arts in Costa Mesa and Laguna Beach. But since the late 1990s, my focus has shifted to hydrocephalus, and a variety of community causes I’ve undertaken with drumming, or drum circles. I also headed up the drumming Meetup, Orange County Drum Circle.
Since 1995, I’ve been a patient advocate for hydrocephalus, and have been answering patient, medical, CNS shunt, and FDA guidan questions on hydrocephalus. In 2009, I began offering consults in monitoring, since my DiaCeph Test for monitoring never became available. For several years, I was also a board member for the National Hydrocephalus Foundation, and helped with PR and fundraising.
In drum circle facilitation, I own enough instruments to put on drum circles for groups as large as 100 people. And I have facilitated groups as large as 250 drummers. I’ve been organizing and facilitating these drum circles over the last 7-8 years in spite of my own health challenges with hydrocephalus and CNS shunt brain surgeries from a 1992 auto accident, which now total 12 surgeries. But, it hasn’t stopped me from giving back, from being involved in CSR and being a pivitol part of Orange County area outreach. Come Sept. 2015, I’ll be putting on two drum circles at the National Hydrocephalus Foundation conference in Anaheim, CA.
Back in the 1980s for several years, I served as an independent consultant and helped in sponsorship of a number of area sporting and community events, including, the 1992 Great American Race. 1998 was my first big fundraising endeavor after my injury, where I headed up field sponsorship for the Foothill High School baseball program. Still today, I feel I understand cause marketing, though I always appreciate others’ feedback. If I had not gotten in an auto accident in 1992 and developed hydrocephalus, my plan was to leave health care completely and transition into sports & entertainment agent services.
There comes a time when even the best of us become recipients of outreach. Since 2012, I’ve been overwhelmed by complications with my hydrocephalus. In March 2015, this led me to I put my own case study and complications up on my blog, knowing all too well I could face scrutiny for it. I felt like I had no choice. I was between a rock and a hard spot, struggling with my health, and struggling to work and take care of myself. You can find it under March 2015 topics.
I’d like HydroPowered.org to be a different take on hydrocephalus outreach, more about fun, cool, a mix of art, technology, and culture – with a super-hero theme too. I felt the platform might be helpful in fundraisers too much as the 2014 Summer ALS ICE Bucket Challenge that became a mainstream hit.
Since 2013, I have been brain storming and scouring the web for HydroPowered art and photos. It now includes hydropowered racing boats, monster waves, hydropowered damns, the Schick Hydro razor, and basketball. I’m an avid shooter and have even written a special blog on my insights into basketball.
The plight of hydrocephalus, the stories, the data, and outcomes remain troubling today. It is the leading neurosurgical procedure in children, and affects individuals from in utero to very late in life. CNS shunts, which first came into use as its primary means of treatment in the 1950s, are still standard treatment today. Outcomes are often followed by disability, many numerous shunt malfunctions, and corrective surgeries. The average life of a shunt today is still about 5 years. Several leading programmable shunts in recent years have also been plagued with bizarre programming failures that added to the chaos. In fact, my own shunt implanted less than two years ago, has already been recalled. So hydrocephalus really needs a make-over!
As for famous individuals with hydrocephalus, the Reverand Billy Graham lived with NPH, a form of hydrocephalus, and a shunt for the last 8-10 years of his life. Rock & Roll guitarist, Dick Wagner of Alice Cooper, who passed away this past July, lived with hydrocephalus for several years. And former San Francisco 49ers player, George Visger, developed hydrocephalus after a series of concussions from football.
As a neuroscientist who provides hydrocephalus monitoring and consults to families in this space, I am adament that CNS shunt technology, and all of its FDA regulations, are in need of an overhaul. We need to change the dynamics and philosophy of the medical field in hydrocephalus care, from “can’t do” to “yes, we will do!” Today, hydrocephalus care & CNS shunt technology remains dominated by a handful of old guard philosophy medical companies and physicians who have resisted the kind of progress we need for many years. Today we need more free-thinkers, more doers! More of an Apple or Google mindset. The same place, same thing, is not producing the kind of advances we need.
I also realize hydrocephalus research is in need of funding, and I believe the HydroPowered platform can play a pivitol role in this going forward. I can compare our plight a bit similar to that of spinal cord injury (SPI) at thetime actor Christopher Reeves became paralyzed. In his case, he almost single-handedly changed the dynamics & funding of SCI. In his brilliant campaign, he initially “called out” the old guard of SCI work that was holding back progress, and then went on to raise money & create progress in SCI treatment that’s not really been seen in any other disorder outside of AIDs.
For several years back in the 1990s, Christopher Reeves had been one of the highest paid speakers in the world, with both political parties vying for him to appear at their conventions. Those were “wow” moments in PR and cause marketing! Today, football players living with SCI, owe vastly improved outcomes to the dynamic efforts of Christopher Reeves.
Below, is my HydroPowered web site & Facebook links. Take a moment to read over it.
The new HydroPowered.org web site has been updated to enable open source sharing of art & designs for persons & families impacted by hydrocephalus. Together with its HydroPowered.org Facebook group, followers will be able to upload and share their art & designs in an “open source” type setting. http://www.hydropowered.org/
“Art can be posted or downloaded from the Facebook site, placed on clothing, or made into stand-alone pieces of art,” says Stephen Dolle, HydroPowered.org’s creator. “Technology can be designs of anything from shunt devices to mobile apps, and there’s no requirement it be related to hydrocephalus, only, the person/family submitting must be impacted by hydrocephalus.”
The second goal or mission, Dolle says, is to raise $100M for new “open source” technology solutions in the care and treatment of hydrocephalus. He says hydrocephalus today remains 25 years behind in comparative technological advances, and he believes this open source concept is the best way to move forward with innovation. Hydrocephalus is also the leading neurosurgical condition in children. The current status of surgical outcomes with hydrocephalus today with CNS shunts is entirely unacceptable! With these funds and new open source initiatives, we believe we can forever change the care and treatment of hydrocephalus.