UCP 2021 Annual Meeting

May 17-18, 2021

This was a virtual conference.

Schedule of Events

May 17, 2021

12:00 to 12:10 p.m. – Opening remarks by UCP President/CEO Armando Contreras and UCP Chairman Keith Graham / Recognition of sponsors (see sponsors’ logos below) / Recognition by Chairman Graham of 12 director support professionals nominated by UCP’s affiliate directors for their extraordinary service and dedication during the pandemic. 

Panel 1

12:10 to 1:30 p.m. – “The Future of Autonomous Vehicles and How This Revolutionary Technology Will Impact the Disability Community”

(Watch a recording of the CEO and Board Chair’s brief opening remarks and this panel discussion.)

Moderator:

UCP Communications Coordinator James Garcia

Panelists

  • Dr. Anne Marie Lewis, Senior Director, Technology, Innovation and Mobility Policy, Alliance for Automotive Innovation
  • Henry Claypool, independent consultant for American Association of People with Disabilities on the We Will Ride project
  • Tim Woods, general manager of the Autonomous Vehicle Alliance and founding partner of POCO labs, a product development and consumer research company
  • Jennifer A. Dukarski, a shareholder based in Butzel Long’s Ann Arbor office.

1:30 to 1:45 p.m. – Break

1:45 – 2 p.m. – Video vignettes (Approximately 7 min. each.)

  • The first video features an interview with Carlos Gonzalez of UCP affiliate, Cerebral Palsy Alberta, about his motivational speaking work and role as co-host with Leah Ison of CP Alberta’s “My Life Without Limits” podcast.
  • The second video features Doug Cole and Miguel Ayala. Cole is the producer of the new independent film, “Making Sense.” Ayala, who has cerebral palsy, is one of the film’s stars. The pair will discuss the indie film’s recent release.

Panel 2

2:00 to 3:30 p.m. – Research Developments and the Evidence for Early Diagnosis and Treatment for Children with Cerebral Palsy

(Watch this panel discussion.)

Moderator:

Valerie Pieraccini, MS OTR, Director of Homebased and Clinic Therapy Programs and Early Learning Center – United Cerebral Palsy of Central Arizona

Panelists

  • Dr. Michael Kruer, Topic: Biomedical Updates for Cerebral Palsy
  • Dr. Diane L. Damiano, Topic: Efficacy of Early Therapy for Children with Cerebral Palsy
  • Dr. Adam Rozumalski, Topic: “Collaboration and Control: Keys to Improving Research in CP”

May 18, 2021

12:00 – 1:45 p.m. – Members of the Corporation Meeting/ Awards Presentations (Closed to the public)

1:45 – 2:00 p.m. – Break

2:00 – 3:20 p.m. – Keynote Address & Q&A

  • Dr. Neil Lamb, an award-winning science communicator and president of educational outreach at HudsonAlpha Institute for Biotechnology in Alabama. Topic: COVID-19 vaccines, treatments, variants of the coronavirus, and the impact on the disabilities community.

(Watch Dr. Lamb’s full video presentation. This video is also available on UCP’s Facebook page.)

3:20 – 3:30 p.m. – Closing Remarks by UCP President/CEO Armando Contreras

Panelists and Moderator Biographies:

Day 1 – Panel Discussion 1

Moderator

James Garcia

James Garcia is communications coordinator for United Cerebral Palsy, a freelance journalist, playwright and communications and policy consultant. An adjunct professor at Arizona State University, he has taught ethnic studies, Latino politics and a wide range of creative and non-fiction writing courses. James is also a playwright and the producing artistic director of New Carpa Theater Co., which stages Latino and multicultural works. He has a journalism degree from the University of Texas at Austin and a Masters of Fine Arts from Arizona State University.

Panelists

Dr. Anne Marie Lewis

Dr. Anne Marie Lewis is the Senior Director of Technology, Innovation and Harmonization at Auto Innovators. Prior to joining Auto Innovators in January 2020, she served a similar role at the Alliance of Automobile Manufacturers for 3 years. Her current portfolio includes policy development and strategic engagement on topics including automated and connected vehicles and vehicle-generated data. Dr. Lewis has a technical background in automotive engineering, having obtained her Ph.D. and M.S.E. in Mechanical Engineering from the University of Michigan and her B.S. from Carnegie Mellon University. Following her Ph.D., she served as an 2013-2014 AAAS Science and Technology Congressional Fellow in the Office of Senator Heitkamp (D-ND) and worked at Booz Allen Hamilton where she was a technical advisor to the Advanced Research Projects Agency for Energy (ARPA-E) at the US Department of Energy (DOE).

Henry Claypool

Henry Claypool works as an independent consultant on the disability implications of health care and technology policy. He has been working on autonomous vehicles since 2015 and authored an often-cited paper on how people with disabilities would benefit from the deployment of autonomous vehicles. His opinion piece in the New York Times on the need for a purpose-built accessible vehicle informed the debate on the types of vehicles that are needed to offer an on-demand autonomous vehicle service to the public. In his work with the American Association of People with Disabilities, he works on the We Will Ride project that convenes national disability organizations to share information that underpins the development and deployment of accessible autonomous vehicles.

Jennifer A. Dukarski

Jennifer A. Dukarski is a Shareholder based in Butzel Long’s Ann Arbor office, practicing in the areas of media and emerging technology. She focuses her practice at the intersection of technology and communications with an emphasis on the legal issues arising from emerging and disruptive innovation: digital media and content, connected and autonomous cars, shared mobility, infotainment, data privacy, and security. Jennifer was named one of the 30 Women Defining the Future of Technology in January 2020 by Warner Communications for her innovative thoughts and contributions to the tech industry. She is a Certified Information Privacy Professional concentrating on the U.S. Private Sector privacy and data protection law (CIPP/US).

Tim Woods

Tim Woods is a Founding Partner of POCO labs a Product Development and Consumer Research Company. Mr. Woods, is also the General Manager of the Autonomous Vehicle Alliance a non-profit collaborative research organization focused on Cities, Business and Consumers. The purpose of the Alliance is to identify the opportunities around the Use Cases and Value Propositions for L4 and L5 Autonomous Vehicles. Recently the AVA conducted a year-long research project focused on Accessible and Barrier Free Vehicles and Infrastructure and the opportunity of thinking about them from a holistic perspective. Tim is a nationally recognized consultant with over 30 years of experience, working to drive innovation and the appropriate use of technology in products and services. He is a respected source of information to the media and has appeared on The Science Channel, Food Network, HGTV, CNN and others as a resource to discuss the future and technology.

Panel Discussion 2

Research Developments and the Evidence for Early Diagnosis and Treatment for Children with Cerebral Palsy

Moderator

Valerie Pieraccini, MS OTR

Valerie Pieraccini MS OTR has worked for UCP of Central Arizona for 27 years as a pediatric occupational therapist and Director of the Therapy Program and Early Learning Center. Valerie is an adjunct professor for the Huntington University OTD program. She is the author of Handprints: Home program for Hand skills and has lectured on the topic of children’s hand skills. Her present focus is on implementing out-patient care pathways for cerebral palsy. She is also co-chair of the United Cerebral Palsy Research Committee.

Panelists

Dr. Michael Kruer

Michael Kruer is a pediatric movement disorders neurologist, developmental pediatrician and molecular geneticist. He serves as an Associate Professor of Child Health, Genetics, Neurology and Cellular & Molecular Medicine at the University of Arizona College of Medicine – Phoenix. He also serves as director of the Pediatric Movement Disorders Program at the Barrow Neurological Institute, Phoenix Children’s Hospital. Dr. Kruer’s early work was supported by an American Academy of Neurology clinical research fellowship, a K08 award from the NIH, a Doris Duke clinical scientist development award, and the receipt of the Shields award from the Child Neurology Foundation. His most prized recognition has been the receipt of the Laura Dozer award in 2019 from UCP of Central Arizona. Michael’s lab is dedicated to understanding how genetic mutations lead to both common (cerebral palsy) and rare movement disorders in children and how genetics can serve as a springboard to improvements in both diagnosis and intervention. Work in his lab also focuses on basic mechanisms of health and disease, particularly the intersection of cellular metabolism (coenzyme A distribution) and stress-response pathways (autophagy and protein translation). Michael’s research has been supported by numerous public and private foundations, philanthropy, industry collaborations, and federal grants, and his work has appeared in highly respected publications including the American Journal of Human Genetics, Annals of Neurology, Brain, Pediatrics, Neurology and Nature Genetics. The Kruer lab is currently collaborating with the Cerebral Palsy Research Network (a nationwide collaborative of cerebral palsy centers of excellence) on an NIH-funded study of CP genomics that leverages a self-contained iConsent platform to facilitate network-wide data-sharing for genetic discovery in Cerebral Palsy. Publications Google Scholar Account

Dr. Adam Rozumalski

Director Of Operations – Center for Gait and Motion Analysis, the busiest clinical gait lab in the country. Organizing, conducting and disseminating original research in the fields of biomechanics and clinical outcomes. Teaching and training engineers and clinicians across the globe. Publications: Google Scholar Account

Diane L. Damiano

Diane L. Damiano, PT, PhD, FAPTA is a Senior Investigator at the National Institutes of Health in Bethesda, Maryland and Chief of the Functional and Applied Biomechanics Section in the Rehabilitation Medicine Department. Her research focuses on the design and investigation of activity-based rehabilitation programs and development of robotic devices to promote optimal motor functioning and enhance muscle and neural plasticity in cerebral palsy. Her laboratory also has pioneered the use of mobile brain imaging technologies to investigate cortical activation during the emergence of motor skills in infants and children with and without cerebral palsy. She has published more than 125 scientific papers and is an Associate Editor of Neurorehabilitation and Neural Repair. She has served as President of the American Academy for Cerebral Palsy and Developmental Medicine (1st physical therapist & 4th woman in their 61 year history) and the Gait and Clinical Movement Analysis Society. In 2016, she was selected as a Catherine Worthingham Fellow of the American Physical Therapy Association, the highest honor in this profession. She recently received a NIH 2020 Director’s Award on Equity and Diversity for her lifelong research and service for children with disabilities and their families. Selected Publications

Day 2 – Keynote Speaker

Dr. Neil Lamb

Dr. Neil Lamb is an award-winning science communicator who leads the educational outreach efforts at the HudsonAlpha Institute for Biotechnology in Huntsville, Alabama. He completed his PhD and postgraduate training at Emory University in Atlanta where he was also a faculty member in the School of Medicine. His career shifted from hands-on research to science education when he realized his true calling: inspiring a passion for human genetics and biotechnology in others. This past year, over 1.9 million students, educators, practitioners and members of the general public were impacted by the efforts of Dr. Lamb and his team.

Thank you to our generous sponsors:

 

Become a sponsor

Contact

Manager of Development, Michael Ludgardo:

mludgardo@ucp.org or (202) 973-7133