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.
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.
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 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
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.
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.
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
DolleCommunications Blog 
Here is an UPDATE and link to a web site on the PROTECT Act S2007 bill in Congress to streamline mHealth apps. Per this site, there has been no progress on the bill, which would indicate medical apps will be hung up for a while longer. Currently, apps such as the DiaCeph Test would cost upwards of $1M to develop because of FDA oversight requirements. Such costs kill any prospects of development since the revenue return on apps like this would be small. Calculate $5 app fee x 10,000 users = only $50,000. So you won’t see medical and diagnostic mHealth apps until there is regulatory modernization. Here’s the government bill link:
https://www.govtrack.us/congress/bills/113/s2007/text
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Here is a DiaCeph hydrocephalus monitoring report from a 2011 patient which is hosted on one of my web pages. It may appear crude, but it’s very scientific and is what modern medicine should be doing to help MANAGE HYDROCEPHALUS & CHRONIC ILLNESS.
I had the patient first fill out forms on his status using instructions I provided. Then I manually graphed his data onto curves using the Excel program. Next, I interpreted his curves which I am well qualified to do.
What the app would do – is automatically insert the non-invasive patient data onto curves & charts. Then the program algorhythm CAN interpret the data/curves into types of most likely malfunction. But FDA would want additional costly guidance for this “diagnostic” feature. So if the program doesn’t do it, the nsg will have to interpret the curves. But without a fee, I’m not sure how many nsgs will interpret this data. Catch 22!
Oddly, FDA seems OK with problem with CNS shunts, but just not with a test that might ID the problems, and provide an ealier diagnosis. These type of mHealth apps would also push industry closer to “social networking,” which is currently mutually not available per FDA & industry. But you’d have patients running around with mHealth information in hand on possible unreported issues with medical drugs & devices, and now you’ve got a real dilemma on reporting of problems! I spoke on social networking of medical drugs & devices at a 2010 FDA town hall conference. Transcript: http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm234031.htm
Someday somebody really famous is going to develop hydrocephalus, and FDA, shunt mfrs, and the Hydrocephalus Association will have a lot to answer for. Right now – there’s a party going on in Washington, and hydrocephalus patients, patient advocate & experts such as myself, and others who aren’t on board with them, aren’t invited! Link to my online report of DiaCeph ICP monitoring: http://www.dollecommunications.com/hydrocephalus-monitoring-reports.htm
So let’s drum like crazy for hydrocephalus. And maybe something will break open!
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