Mr. Tapscott, please allow me to introduce some of the multi-stakeholder groups at work within an...

Multi-stakeholder groups (networks) that are working in and around the cerebral palsy arena. Makes use of the taxonomy Don Tapscott uses for discussing Global Solution Networks.

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Mr. Tapscott, please allow me to introduce some of the multi-stakeholder groups at work within and around the "CP ecosystem." by Mind Map: Mr. Tapscott, please allow me to introduce some of the multi-stakeholder groups at work within and around the "CP ecosystem."

1. G-Z

1.1. InterAction

1.1.1. Description:

1.1.1.1. Purpose:

1.1.1.1.1. What unites us is a commitment to working with the world's poor and vulnerable, and a belief that we can make the world a more peaceful, just and prosperous place – together.

1.1.1.1.2. InterAction serves as a convener, thought leader and voice of our community. Because we want real, long-term change, we work smarter: We mobilize our members to think and act collectively, because we know more is possible that way. We also know that how we get there matters. So we set high standards. We insist on respecting human dignity. We work in partnerships.

1.1.1.2. Members:

1.1.1.2.1. InterAction is an alliance organization in Washington, D.C. of U.S.-based international organizations.

1.1.1.2.2. Our members, more than 180 nongovernmental organizations (NGOs), work around the world.

1.1.2. Global Solution Network?

1.1.2.1. Diverse Stakeholders

1.1.2.2. Beyond One Nation State

1.1.2.3. Networking

1.1.2.4. Progressive Goals

1.1.3. Type of group / network?

1.1.3.1. What they call themselves:

1.1.3.1.1. InterAction is an alliance organization in Washington, D.C. of U.S.-based international organizations.

1.1.3.2. Tapscott taxonomy:

1.2. LifeLabs

1.2.1. Description:

1.2.1.1. Purpose:

1.2.1.1.1. Life Labs is a technology and grassroots-focused initiative of United Cerebral Palsy dedicated to identifying, developing, and supporting ideas that will make a difference in the lives of people with disabilities.

1.2.1.2. Members:

1.2.1.2.1. Through dynamic collaborations with individuals, businesses, and communities, we help bring innovative ideas to life.

1.2.2. Global Solution Network?

1.2.2.1. Diverse Stakeholders

1.2.2.2. Beyond One Nation State

1.2.2.3. Networking

1.2.2.4. Progressive Goals

1.2.3. Type of group / network?

1.2.3.1. What they call themselves:

1.2.3.2. Tapscott taxonomy:

1.3. NeuroDevNet

1.3.1. Description:

1.3.1.1. Purpose:

1.3.1.1.1. NeuroDevNet, a Canadian Network of Centres of Excellence (NCE), is dedicated to helping children overcome neurodevelopmental disorders. Network investigators seek to understand the causes of neurological deficits, and to transfer this knowledge to health care professionals, policy makers, and communities of interest. NeuroDevNet works with its partners in academia, the community, not-for-profit sector, industry, and government, and across traditional disciplinary boundaries and sectors, to ensure generated knowledge is translated into tangible diagnostic, preventative, therapeutic, social, economic, and health benefits for all.

1.3.1.1.2. NeuroDevNet supports transformative research, provides training to build a new generation of Canadian researchers, strengthens communities with the right tools and information, and translates research findings into early diagnostic, preventative, and therapeutic strategies for children with neurological disorders to live healthier lives. Currently, the network's research focuses on autism spectrum disorder, cerebral palsy, and fetal alcohol spectrum disorder. These demonstration projects are supported by NeuroDevNet’s central infrastructure and cores, including Neuroethics, Neuroinformatics, and Knowledge Translation.

1.3.1.2. Members:

1.3.1.2.1. NeuroDevNet connects partner organizations with university-based researchers who have multidisciplinary expertise dealing with children’s brain disorders. Our partner organizations participate in research projects, internships with graduate students and post doctoral fellows, and scientific workshops.

1.3.2. Global Solution Network?

1.3.2.1. Diverse Stakeholders

1.3.2.2. Beyond One Nation State

1.3.2.3. Networking

1.3.2.4. Progressive Goals

1.3.3. Type of group / network?

1.3.3.1. What they call themselves:

1.3.3.2. Tapscott taxonomy:

1.4. NeuroNext Network

1.4.1. Description:

1.4.1.1. Purpose:

1.4.1.1.1. Background

1.4.1.1.2. Introducing NeuroNEXT –A clinical research network designed to accelerate therapy development

1.4.1.1.3. To address the opportunities and need for testing new therapies, NINDS has established the Network for Excellence in Neuroscience Clinical Trials, or NeuroNEXT. The network was created with three main goals in mind. First, we want to support scientifically valid, biomarker-informed Phase 2 (exploratory) clinical trials so that we can efficiently test new treatments before embarking on large and costly Phase 3 (efficacy) trials. Second, we want to expand our ability to test the most promising new therapies, whether from academic or industry investigators. Third, as trial opportunities arise for a wide range of disorders affecting both children and adults, we want to provide the infrastructure for and expertise of a cadre of disease-specific investigators.

1.4.1.2. Members:

1.4.1.2.1. Through NeuroNEXT, the NINDS is supporting 25 clinical sites across the United States, together with two other components: a clinical coordinating center to provide cost-effective management in operating multiple trials, and a data coordinating center that will provide state-of-the-art efficient statistical designs and take advantage of the economy of scales in data management and quality control, as well as set the stage for the sharing and mining of the valuable clinical datasets generated from the many research projects funded by the NINDS. One particularly innovative aspect of NeuroNEXT is the use of a common IRB that should significantly decrease the time between trial design and initiation while ensuring patient safety.

1.4.1.2.2. NeuroNEXT will provide a robust, standardized, and accessible infrastructure to facilitate rapid development and implementation of protocols in neurological disorders affecting adult and/or pediatric populations. The network includes multiple Clinical Sites, one Clinical Coordinating Center (CCC) and one Data Coordinating Center (DCC)

1.4.2. Global Solution Network?

1.4.2.1. Diverse Stakeholders

1.4.2.2. Beyond One Nation State

1.4.2.3. Networking

1.4.2.4. Progressive Goals

1.4.3. Type of group / network?

1.4.3.1. What they call themselves:

1.4.3.2. Tapscott taxonomy:

1.5. Openconnectome

1.5.1. Description:

1.5.1.1. Purpose:

1.5.1.1.1. M I S S I O N The primary motivating force behind the Open Connect​ome Project is to make state-of-the-art neuroscience open to anybody with computer access, regardless of knowledge, training, or background. Open science means open to view, play, analyze, contribute... anything.

1.5.1.1.2. We provide a number of services, for anybody collecting and/or analyzing connectome data.

1.5.1.2. Members:

1.5.2. Global Solution Network?

1.5.2.1. Diverse Stakeholders

1.5.2.2. Beyond One Nation State

1.5.2.3. Networking

1.5.2.4. Progressive Goals

1.5.3. Type of group / network?

1.5.3.1. What they call themselves:

1.5.3.2. Tapscott taxonomy:

1.6. Pediatric Neurorehabilitation Symposium

1.6.1. Description:

1.6.1.1. Purpose:

1.6.1.1.1. Presenters from Chile, Switzerland, and the US will speak of new technologies in neurorehabilitation, motivating children with virtual environments, surgical and pharmacological interventions, and research in pediatric neurological pathologies. The Pediatric Neurorehabilitation Symposium 2013 is the official pre-conference to the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine.

1.6.1.2. Members:

1.6.1.2.1. This event is organized by the Rehabilitation Institute of Chicago, the International Telethons Organization, and the company Hocoma and will be held from October 15 – 16, at the RIC in Chicago.

1.6.1.2.2. Attendees of the symposium will be clinicians and therapists with interest in modern neurorehabilitation, and other participants with scientific interest in innovative rehabilitation technology. This pre-conference will bring together scientists from highly recognized institutions worldwide and clinical users of innovative therapeutic methods and technologies. The event will offer clinicians and scientists a platform to discuss trends, share expertise, exchange ideas and gain knowledge to assess and use new technologies and therapy concepts in their daily practice.

1.6.2. Global Solution Network?

1.6.2.1. Diverse Stakeholders

1.6.2.2. Beyond One Nation State

1.6.2.3. Networking

1.6.2.4. Progressive Goals

1.6.3. Type of group / network?

1.6.3.1. What they call themselves:

1.6.3.2. Tapscott taxonomy:

1.7. RFTS with AACPDM, CDC...

1.7.1. Description:

1.7.1.1. Purpose:

1.7.1.1.1. We (Reaching for the Stars) actively seek out collaborative partnerships because we know open, productive collaboration is going to be the key to creating a better future for those already impacted by CP, as well as those yet to be diagnosed.

1.7.1.2. Members:

1.7.1.2.1. We value our official partnerships with the CDC and the AACPDM. We’ve continuously sought out ways to provide thousands of families access to important Cerebral Palsy information at no cost through our joint programs with the CDC for Cerebral Palsy Awareness Day, our co-sponsored Family Forum with the AACPDM, educational conferences for families through partnerships with leading medical institutions, access to Cerebral Palsy Resources, Clinical Trials and much more.

1.7.1.2.2. These partnerships and alliances are in addition to our growing relationships with other key nonprofit foundations including the CP Alliance (Australia), CPIRF, CanChild (Canada), the Indian Cerebral Palsy Association, the Cerebral Palsy Research Registry and many others.

1.7.2. Global Solution Network?

1.7.2.1. Diverse Stakeholders

1.7.2.2. Beyond One Nation State

1.7.2.3. Networking

1.7.2.4. Progressive Goals

1.7.3. Type of group / network?

1.7.3.1. What they call themselves:

1.7.3.1.1. partnership

1.7.3.2. Tapscott taxonomy:

1.8. Walk Again Project

1.8.1. Description:

1.8.1.1. Purpose:

1.8.1.1.1. Brain waves can now control the functioning of computer cursors, robotic arms and, soon, an entire suit: an exoskeleton that will allow a paraplegic to walk and maybe even move gracefully.

1.8.1.1.2. Sending signals from the brain's outer rindlike cortex to initiate movement in the exoskeleton represents the state of the art for a number of bioelectrical technologies perfected in recent years.

1.8.1.2. Members:

1.8.1.2.1. The Walk Again Project, a nonprofit, international collaboration among the Duke University Center for Neuroengineering, the Technical University of Munich, the Swiss Federal Institute of Technology in Lausanne, and the Edmond and Lily Safra International Institute of Neuroscience of Natal in Brazil. A few new members, including major research institutes and universities all over the world, will join this international team in the next few months.

1.8.2. Global Solution Network?

1.8.2.1. Diverse Stakeholders

1.8.2.2. Beyond One Nation State

1.8.2.3. Networking

1.8.2.4. Progressive Goals

1.8.3. Type of group / network?

1.8.3.1. What they call themselves:

1.8.3.2. Tapscott taxonomy:

1.9. World CP Day

1.9.1. Description:

1.9.1.1. Purpose:

1.9.1.1.1. World Cerebral Palsy Day on Wednesday 02 October 2013 is an innovative way for 17 million people with CP to tell the world what they needed to make their lives better.

1.9.1.1.2. The World CP Day concept was developed by an international group of 50 cerebral palsy charities, known colloquially as the Amsterdam Group. The initiative is part of a broader vision to draw attention to, and address, the concerns of people with cerebral palsy and their families, by leveraging the collective and regional experience of members and their organisations. The lead organisation for WCPD is Cerebral Palsy Alliance in Australia, with support from Cerebral Palsy Association in Alberta - Canada and UCP in the USA.

1.9.1.2. Members:

1.9.1.2.1. World CP Day is a unique, global initiative that brings together the disability and innovation communities to create a brighter future for 17 million people with cerebral palsy. The campaign is an opportunity for people with cerebral palsy, their friends and supporters to share their ideas for a better world, and for inventors and innovators to make these ideas a reality.

1.9.2. Global Solution Network?

1.9.2.1. Diverse Stakeholders

1.9.2.2. Beyond One Nation State

1.9.2.3. Networking

1.9.2.4. Progressive Goals

1.9.3. Type of group / network?

1.9.3.1. What they call themselves:

1.9.3.1.1. The ‘day’ is on the 1st Wednesday in October – 2 October in 2013 – but the project cycle spans the entire year.

1.9.3.2. Tapscott taxonomy:

2. A-F

2.1. AbilityLinks Consortium

2.1.1. Type of group or network

2.1.1.1. What they call themselves:

2.1.1.1.1. a consortium

2.1.1.2. Tapscott taxonomy:

2.1.2. Global Solution Network?

2.1.2.1. Diverse Stakeholders

2.1.2.2. Beyond One Nation State

2.1.2.3. Networking

2.1.2.4. Progressive Goals

2.1.3. Description:

2.1.3.1. Purpose:

2.1.3.1.1. AbilityLinks' mission is to increase employment of qualified persons with disabilities

2.1.3.1.2. AbilityLinks is a nationwide, web-based community where qualified job seekers with disabilities and inclusive employers meet and gain access to valuable networking opportunities.

2.1.3.2. Members:

2.1.3.2.1. Nonprofits, government agencies and businesses join AbilityLinks to support this mission and access valuable disability-employment networking opportunities.

2.2. American Brain Coalition

2.2.1. Description:

2.2.1.1. Purpose:

2.2.1.1.1. The American Brain Coalition is a non-profit organization comprised of some of the United States’ leading professional neurological, psychological, and psychiatric associations and patient organizations. Together, we seek to advance the understanding of the functions of the brain, and to reduce the burden of brain disorders through public advocacy.

2.2.1.1.2. Vision: The ABC will be a strong and powerful voice for people with disabling brain disorders bringing together organizations that represent concerned and interested patients, families, and professionals.

2.2.1.2. Members:

2.2.1.2.1. Nonprofit

2.2.1.2.2. Corporate/For-profit

2.2.1.2.3. Observers

2.2.2. Global Solution Network?

2.2.2.1. Diverse Stakeholders

2.2.2.1.1. There are participants from at least two of the four pillars of society

2.2.2.2. Beyond One Nation State

2.2.2.2.1. The network should be global or at least multi-national, having participants from more than one country.

2.2.2.3. Networking

2.2.2.3.1. Is it a 21st century network in the sense that it harnesses some forms of digital communications tools and platforms to achieve its goals?

2.2.2.4. Progressive Goals

2.2.2.4.1. Does the network seek to improve the state of the world, i.e., create global public goods?

2.2.3. Type of group / network?

2.2.3.1. What they call themselves:

2.2.3.1.1. a coalition

2.2.3.2. Tapscott taxonomy:

2.2.3.2.1. Advocacy Network

2.3. BRAIN Initiative

2.3.1. Description:

2.3.1.1. Purpose:

2.3.1.1.1. On April 2, 2013, President Obama launched the BRAIN Initiative to “accelerate the development and application of new technologies that will enable researchers to produce dynamic pictures of the brain that show how individual brain cells and complex neural circuits interact at the speed of thought.”

2.3.1.2. Members:

2.3.1.2.1. Over the past four months, the working group met seven times and held workshops with invited experts to discuss technologies in chemistry and molecular biology; electrophysiology and optics; structural neurobiology; computation, theory, and data analysis; and human neuroscience.

2.3.1.2.2. Each workshop included opportunity for public comments, which were valuable for considering the perspectives of patient advocacy groups, physicians, and members of the lay public.

2.3.1.2.3. In response to this Grand Challenge, NIH convened a working group of the Advisory Committee to the Director, NIH, to develop a rigorous plan for achieving this scientific vision.

2.3.2. Global Solution Network?

2.3.2.1. Diverse Stakeholders

2.3.2.1.1. There are participants from all four pillars of society.

2.3.2.2. Beyond One Nation State

2.3.2.2.1. This is an "American Project"

2.3.2.3. Networking

2.3.2.3.1. Harnesses digital communications tools and platforms to achieve its goals.

2.3.2.4. Progressive Goals

2.3.2.4.1. The network certainly seeks to improve the state of the world, i.e., create global public goods.

2.3.3. Type of group / network?

2.3.3.1. What they call themselves:

2.3.3.2. Tapscott taxonomy:

2.3.3.2.1. Knowledge Network

2.4. BrainGate

2.4.1. Description:

2.4.1.1. Purpose:

2.4.1.1.1. The BrainGate research team includes leading neurologists, neuroscientists, engineers, computer scientists, neurosurgeons, mathematicians, and other researchers – all focused on developing technologies to restore the communication, mobility, and independence of people with neurologic disease, injury, or limb loss. This diverse and collaborative team creates and tests the devices that are ushering in a new era of transformative neurotechnologies.

2.4.1.2. Members:

2.4.1.2.1. The BrainGate Research Team at Brown University, Massachusetts General Hospital, Stanford University, and Providence VA Medical Center comprises physicians, scientists, and engineers working together to advance understanding of human brain function and to develop neurotechnologies for people with neurologic disease, injury, or limb loss. We hope that these technologies will become a powerful means to restore communication, mobility, and independence to people with paralysis. The team’s investigator-initiated research is focused solely on advancing the science and medicine of restorative neural interfaces.

2.4.2. Global Solution Network?

2.4.2.1. Diverse Stakeholders

2.4.2.2. Beyond One Nation State

2.4.2.3. Networking

2.4.2.4. Progressive Goals

2.4.3. Type of group / network?

2.4.3.1. What they call themselves:

2.4.3.2. Tapscott taxonomy:

2.5. Cambridge Neuroscience

2.5.1. Description:

2.5.1.1. Purpose:

2.5.1.1.1. Cambridge Neuroscience — connecting multidisciplinary neuroscience research and teaching across the University of Cambridge and affiliated Institutes, with a mission to increase our fundamental understanding of brain function and enhance quality of life

2.5.1.2. Members:

2.5.1.2.1. Collaboration in Action Neuroscience at Cambridge is collaborative and dynamic, with members of the community engaged in widespread collaborations across numerous Departments and Institutes. Cambridge Neuroscience also has a formidable track record when it comes to breaking down the barriers between science and business. Large multinational companies such as GlaxoSmithKline, Microsoft and Toshiba have established collaborations with Cambridge collaborations with Cambridge researchers, while numerous spin-off companies are thriving and retaining excellent links with the University.

2.5.2. Global Solution Network?

2.5.2.1. Diverse Stakeholders

2.5.2.2. Beyond One Nation State

2.5.2.3. Networking

2.5.2.4. Progressive Goals

2.5.3. Type of group / network?

2.5.3.1. What they call themselves:

2.5.3.2. Tapscott taxonomy:

2.6. CP Genetics Collaborative Network

2.6.1. Description:

2.6.1.1. Purpose:

2.6.1.1.1. Contributing centers are working together to gather samples from children and adults with CP for whom no cause has thus far been identified.

2.6.1.2. Members:

2.6.1.2.1. Network collaborators:

2.6.1.2.2. supported by the American Academy of Cerebral palsy and Developmental Medicine

2.6.2. Global Solution Network?

2.6.2.1. Diverse Stakeholders

2.6.2.2. Beyond One Nation State

2.6.2.3. Networking

2.6.2.4. Progressive Goals

2.6.3. Type of group / network?

2.6.3.1. What they call themselves:

2.6.3.2. Tapscott taxonomy:

2.7. Disability Research Consortium

2.7.1. Description:

2.7.1.1. Purpose:

2.7.1.1.1. The Disability Research Consortium [DRC] consists of two cooperatively funded research centers: Mathematica Policy Research's Center for Studying Disability Policy and the National Bureau of Economic Research's Disability Research Center. The centers are funded by SSA through five-year cooperative agreements running from FY2012 through FY2017.

2.7.1.1.2. The CSDP and its partners in the DRC will build the evidence base to support policy improvements for three disability populations:

2.7.1.2. Partners:

2.7.1.2.1. The University of Illinois at Chicago (UIC)

2.7.1.2.2. The University of Massachusetts Medical School (UMMS)

2.7.1.2.3. Virginia Commonwealth University (VCU)

2.7.2. Global Solution Network?

2.7.2.1. Diverse Stakeholders

2.7.2.2. Beyond One Nation State

2.7.2.3. Networking

2.7.2.4. Progressive Goals

2.7.3. Type of group / network?

2.7.3.1. What they call themselves:

2.7.3.2. Tapscott taxonomy:

2.8. FasterCures' Partnering for Cures conference

2.8.1. Description:

2.8.1.1. Purpose:

2.8.1.2. Members:

2.8.2. Global Solution Network?

2.8.2.1. Diverse Stakeholders

2.8.2.2. Beyond One Nation State

2.8.2.3. Networking

2.8.2.4. Progressive Goals

2.8.3. Type of group / network?

2.8.3.1. What they call themselves:

2.8.3.2. Tapscott taxonomy: