Fun Web Site for Hydrocephalus features Super-Heroes and Art

Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner
Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner

In 2013, I obtained the HydroPowered.org domain 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.org web site by researching domains that were available with the word “hydro,” short for hydrocephalus, which means water on the brain.

HydroPowered.org Share the Passion for Hydrocephalus
HydroPowered.org Share the Passion for Hydrocephalus

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.

Facebook “Hydro” Art

“Hydro” Art and Designs for Hydrocephalus on HydroPowered.org

Hydrocephalus Awareness Month 2014
Hydrocephalus Awareness Month 2014

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.

Hydrocephalus HydroPowered Super-Heroes

Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org
Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org

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.

Drumming workshop for balance and movement challenges in living with hydrocephalus
Drumming workshop for balance and movement challenges in living with hydrocephalus

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.

Drum-off for Hydrocephalus

Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.
Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.

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.

Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans
Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans

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.

Stephen Dolle in Washington, D.C. for 1999 STAMP Conference
Stephen Dolle in Washington, D.C. for 1999 STAMP Conference

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.

Hydrocephalus Awareness Month 2014
Hydrocephalus Awareness Month 2014
Stephen Dolle receives award at Costa Mesa Chamber event.
Stephen Dolle receives award at Costa Mesa Chamber event.

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.

Drumming for Wellness at the UCI Women's Wellness Day
Drumming for Wellness at the UCI Women’s Wellness Day

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.

Pain management and mindfulness in Shunt Revision
Pain management and mindfulness in Shunt Revision

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.

Sports vs. Brain Science of Basketball

Your Basketball Spirit Guide may help more than you know during Shooting
Your Basketball Spirit Guide may help more than you know during Shooting

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.

Incredible Hulk Inspires Kids and others with Hydrocephalus
Incredible Hulk Inspires Kids and others with Hydrocephalus
The DiaCeph mobile phone app would improve greatly improve hydrocephalus care Worldwide. But the U.S. lags in mHealth development.
Android DiaCeph App for Hydrocephalus would improve hydrocephalus care worldwide

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.

HydroPowered.org

HydroPowered Facebook Group

SpiderMan Movie Trailer

Contact me if you would like to speak with me. 

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
Tel. (949) 6424592
Dolle Communications

HydroPowered.org

Stephen Dolle Headshot in a Suit
Stephen Dolle Headshot in a Suit

Drum Off for Hydrocephalus Awareness

Drumming workshop for balance and movement challenges in living with hydrocephalus
Drumming workshop for balance and movement challenges in living with hydrocephalus

OK. This Thursday Sept. 24, 2015 I 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.

Notre Dame Drumline Friday Afternoon Drummers Circle

I am offering to organize a “DRUM OFF FOR HYDROCEPHALUS” and have it VIDEOTAPED and posted on YouTube. Then, I’d be looking for others around the world affected by hydrocephalus, or interested in helping the cause, to organize their own drum circle with instruments of their culture and region, and post a video of their DRUM-OFF on YouTube – so we may have an international conversation on hydrocephalus. I’ve enclosed the video of the Notre Dame drum off for breast cancer as an example.

I had hoped to do this at the 2015 NHF Conference on Sept. 24th or 25th in Anaheim, CA. But I’m informed the schedule cannot fit it in. We have hydrocephalus groups around the world, and in remote places like Nigeria. I’d love to involve our global “hydro brothers & sisters” in a global “drum off for hydrocephalus.” I envision it as a bit like “Playing for Change” too. And if someone wanted to edit some of the drum segments and create one master song, I’d be very excited for that.

Along with the Drum-off for Hydrocephalus, I’d like to also feature the web site HydroPowered.org – which I created two years ago to further hydrocephalus awareness, and to allow those affected by hydrocephalus to come together to share art, technology, super hero stories, and fun stuff separate from their medical stories.

My Story on HydroPowered.org

I have personally been living with the disorder hydrocephalus since 1992, and I would be participating in this as organizer, drummer, facilitator, and affected patient. As a patient advocate, I’ve been involved in advocacy, public policy, and the development of mHealth technology hydrocephalus. Still today it remains complicated by a lack of medical research and innovation in new treatments, CNS shunt and diagnostic technology, and awareness.

HydroPowered.org Share the Passion for Hydrocephalus
HydroPowered.org Share the Passion for Hydrocephalus

So I need an alternative 2015 venue to hold the Drum-off for Hydrocephalus if I want it done this year. I have enough instruments for 75-100 people, though we ideally only need 30-50 playing. And I will invite 10 or so experienced drummers to help in supporting the drumming. I need to have someone be responsible for videotaping the performance, and perhaps some interviews. I and others I know have video cameras, or even a phone camera might do. But editing the video takes some skill. I can only do basic editing for posting on YouTube. I will also need to have a banner made (VistaPrint) saying “Hydrocephalus Drum-Off, Orange County, CA.” And this can be displayed with the video on YouTube. Once I have a date and location selected, I can post updates here and on http://www.HydroPowered.org site and Facebook group.

I will still be offering two drumming workshops at the National Hydrocephalus Foundation PATIENT POWER conference on Sept. 24th 2015. This would allow individuals and families affected by hydrocephalus to come together and experience the POWER of the drum, and the POWER of connectedness for hydrocephalus.

National Hydrocephalus Foundation (NHF)

NHF Logo
NHF Logo

NHF PATIENT POWER Conference Agenda

https://www.facebook.com/events/1471103479847030/

Below, is a video from a drum circle I put on in 2012 for Young Onset Parkinson’s Disease, and it was part of the 2012 Young Onset Parkinson’s Conference in Orange County, CA.

OC Conference 2012 030.MOV

 

Drumming for wellness helps seniors and those facing chronic illness
Drumming for wellness helps seniors and those facing chronic illness
Drum Circles make for great Children's Activity as young as age 3.
Drum Circles make for great Children’s Activity as young as age 3.

Hydrocephalus effects about 1 in 1000 infants & young children, and occurs in seniors as the disorder NPH (normal pressure hydrocephalus), and it also occurs to others following head trauma, hemorage, tumor, cyst, and often occurs secondary to spina bifida, Dandy-Walker, Arnold-Chiari, and meningitis. In children, it is the most commonly performed neurosurgical procedure. It poses numerous diagnostic challenges to physicians, families, and those living with it. Hydrocephalus is treated the same around the world, mostly by implanting a CNS shunt. So, a mHealth mobile or software app would help individuals in the U.S. as well as developing countries like Africa & S. America.

Seniors came alive to play and dance during this 2010 drum circle at the Costa Mesa senior center.
Seniors came alive to play and dance during this 2010 drum circle at the Costa Mesa senior center.
Drumming is a great tool in teambuilding and in engaging those around you
Drumming is a great tool in teambuilding and in engaging those around you

In developing countries, hydrocephalus is even more tragic and fatal. Doctors without borders and other organizations, often travel to developing countries to perform initial surgeries. But since shunt failure is a common occurance, follow up diagnostics and availability to corrective surgery presents additional challenges. The availability of a mobile software app to collect and document developing patient status information would help save lives and minimize shunt complications. A diagnostic mobile app could offer early critical diagnostic information on device function and patient status.

Stephen Dolle in Washington, D.C. for 1999 STAMP Conference
Stephen Dolle in Washington, D.C. for 1999 STAMP Conference

The purpose of the “Hydrocephalus Drum-Off” is to raise awareness of hydrocephalus, and to help with fundraising and funding of hydrocephalus research in the U.S. and worldwide.

Related Blogs and Information

Spread Awareness of Hydrocephalus on Rare Disease Day 2015

Cause Marketing Web Site for Hydrocephalus uses Super-Hero Theme

Fundraising for Hydrocephalus: Follow the Creators of the Ice Bucket Challenge

Hydrocephalus Monitoring Method Hopes to be new mHealth App

How the Internet is like one big DRUM CIRCLE

Contact me through my web site my information here. 

Stephen Dolle

Dolle Communications