Hacking Alzheimers

In June 2013 whilst attending ISTAS13 in Toronto Canada ( http://sites.ieee.org/istas-2013 ) I met with an inspirational individual by the name of Andy Kropa, New York City resident and avid photographer - https://plus.google.com/u/0/+AndyKropa/about

Andy and I discussed a number of things relating to his personal experience with Alzheimers. I encourage you to take the time and watch the following resource that Andy created which gives you the context for my following call on your involvement in this project.

The original full length video is incredibly moving and provides a personal account of the incredibly challenging affects that Alzheimer's has on millions of people, wordwide everyday of the year.

..."I lost my mother, Susan (Young) Kropa to early-onset Alzheimer's disease in 2011. My mom was a painter, illustrator, author and elementary school art teacher for over 25 years. When she first developed Alzheimer's disease around age 60 the progression was slow and gradual. In the late spring of 2011, her symptoms grew worse rapidly and it soon became apparent she would need around the clock professional care. These photographs are from what turned out to be the last time I saw her."

Andy also connected with a number of international network contacts of mine in the Webheads International group, hosted principally by the brilliant Vance Steven's and long term friend and colleague, Michael Coghlan. They spoke with Andy about his ideas for developing or adapting a technology that would address the core facets of life fulfilment for someone with Alzheimers, their families and their loved ones.

The following conversation also cut new ground in discussions across the Teach and Learn Online group (TALO) which has for a long period of time fostered critical discussions regarding the use of new and emergent technologies across an international education, training and at times philosophically rich range of other industry cross-sections.

Prior to that we met with the INSPIRE team and we discussed Andy's ideas, concepts and his ambitions to connect with the Australasian region and to engage in this research and creative development process.

I note that individuals who are well known in this area through a range of research centres of excellence including Cathal Gurrin, Dublin University are making known their support for this research concept - https://plus.google.com/u/0/+AndyKropa/posts/Jp5xwa3HaDZ

It is now time to consider a conjoint research association between those major organisations that will connect Andy's ambitions to that of empirical research, to bring the Narrative Clip, #glass, Autographer and many other technocentric development projects into contact with the likes of the Australian Alzheimer's Association supported / facilitated by those research Centre's including the University of Canberra.

There are a plethora of papers, projects and related developments that will serve to "backbone" this project with noted champions including Gordon Bell who has  for decades investigated ways to 'total recall' and enhance access via e-memory which in many ways parralells that of Kropa's ambitions.

"...Gordon Bell, legendary lifelogger at Microsoft and author of Total Recall, gave a candid, engaging talk on his MyLifeBits project. He showed pictures from his SenseCam that takes a picture every 20 seconds while he's wearing it. He generates 1 GB of data per month, including a screenshot of every website he visits and the hundreds of pages of health records from his multiple bypass surgeries. Gordon considers his data to be a surrogate memory - he doesn't look at it unless he needs to remember something specific, and he enjoys making films from the pictures. Resources that he mentioned using include an Oregon Scientific pedometer and the Canyon Ranch preventive health resort in Lenox, Massachusetts."

During a time in late 2013 when I was recovering from a broken arm surgery I noted that Andy loaded a resource to the Hacking G+ Community - Google Glass as a brain prosthetic - http://www.huffingtonpost.com/george-vradenburg/alzheimers-google-glass-as-brain-prosthetic_b_4637488.html

Those associations are also closely mirrored with the works of +Cathie Reid who is working in aged and health care across a number of international communities.

Given my efforts to also engage with the #glassexplorercommunity I consider the time is right to bring together this initiative in an open association, as a #dataminds activity that generates ideas, maps concepts and brings to fruition Andy's ideas.

I'm seeking ways to:

  1. Formally declare our research associations with Andy's project;
  2. Facilitate ongoing engagements, events, workshops, design lab conversations with project partners and stakeholders;
  3. Acknowledge those technology industry partners and sponsors who come on board to engage in this project development;
  4. Integrate this project initiative with  the #dataminds initiative through the INSPIRE Centre at University of Canberra;
  5. Proactively address the very real health and well being impacts that Alzheimer's has upon many Australasian's networking this project with many others that are also on in an international context

This post will go out across a number of networks so if you happen to be reading this to this point I encourage you to make a comment in this website, contact Andy Kropa or myself or reach out across the many other social media contacts you will find in this regard through the Hacking Alzheimer's G+ Community.

We welcome your thoughts and ideas on this valuable action research project.