CPF - Key Persons

Dr. Andrea Freeman Duncan received her MD from the University of Texas Southwestern Medical Center at Dallas in 2002. She completed her Pediatric residency and fellowship in Neonatal-Perinatal Medicine at the University of Texas Southwestern Medical Center at Dallas. She was subsequently a clinical scientist faculty member and mentor at the University of New Mexico and the University of Texas at Houston McGovern Medical School. She joined the faculty of the University of Pennsylvania and Children's Hospital of Philadelphia in 2019 and is the Medical Director of the Neonatal Follow-up Program there. Dr. Duncan is also the Principal Investigator for Neurodevelopmental Follow-up for the Children's Hospital of Philadelphia site of the Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network. She is also the Principal Investigator for the Children's Hospital of Philadelphia site of the Cerebral Palsy Foundation Early Detection of Cerebral Palsy Network. Her main research interest is in long-term medical and neurodevelopmental outcomes of NICU graduates. This has included previous research in the effects of very-low-birth weight and postnatal growth on blood pressure during the first three years of life, the role of ethnic and social factors on Bayley Scales of Infant Development Cognitive and Language Scale scores in children born extremely premature, the effect of parenting style on self regulation in children born preterm, the correlation of neuroimaging with outcomes in children born extremely preterm, motor outcomes in high-risk children, and the effects of implementation of the international guidelines for early assessment for CP on diagnoses and outcomes in high risk infants. Her current research involves evaluation of executive functioning and brain connectivity in high-risk infants, parenting style in high risk infant development, and the use of implementation science to translate evidence to practice.

Job Titles:

• Project Manager of Engagement & Communities

Ashley Harris Whaley is the Project Manager of Engagement & Communities at the Cerebral Palsy Foundation. Ashley has a lifetime of lived experience as a disabled woman with spastic diplegia cerebral palsy. She is a member of the American Speech-Language-Hearing Association and is a board-certified Speech-Language Pathologist. Ashley holds a Master's degree in Communication Sciences and Disorders from Western Carolina University. Ashley is a freelance writer, established public speaker, and online educator. She is the founder of Disability Reframed, a collaborative online learning community that worKs to dismantle antiquated attitudes towards disability and rebuild them by changing perspectives through education and conversation. Her debut children's book, I Am, You Are, with Penguin Random House UK is due out in spring 2023.

Job Titles:

• Emeritus Professor Robert Schuman Centre for Advanced Studies at the European University Institute

Job Titles:

• Vice President of Education and Inclusion

Debbie Fink (she, her) is the Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship "Just Say Hi" program. She has been working in the fields of disability inclusion, education, and public health for two decades. Debbie collaborates with an array of stakeholders to create, implement, assess, and scale multimodal educational programs, trainings, and summits to audiences both in-person and virtual (reaching 45K+ during the pandemic). Debbie's experience includes managing the creation of a virtual education resource guide to support students with disabilities during COVID-19; touring globally as guest educator/performer with the USO, promoting literacy and socio-emotional wellbeing for students in DODEA schools; collaborating with former FLOTUS Michelle Obama's Joining Forces team on behalf of military-connected children and families; co-developing curricula with Teachers of the Year and co-authoring children's books; working with schools in multiple school systems; and globally impacting over 500K beneficiaries - students, educators, and parents - through a children's publishing and programming company which she founded. Most recently, Debbie developed and implemented empowerment trainings for girls and women with disabilities, and launched RespectAbility's National Disability Speakers Bureau. With a Master's Degree combining Education, Psychology, and Public Administration, Debbie is deeply committed to social impact, cultivating an inclusive society for children and adults of all abilities.

Deborah Gaebler-Spira completed a Pediatric residency at the University of Chicago and then pursued a residency in Physical Medicine and Rehabilitation residency at the Shirley Ryan AbilityLab (previously Rehabilitation Institute of Chicago). She is board certified in Pediatrics, Physical Medicine and Rehabilitation and Pediatric Rehabilitation Medicine. She has been affiliated with Northwestern Memorial Hospital, Children's Memorial Hospital as a Professor of Physical Medicine and Rehabilitation and Pediatrics at the Shirley Ryan AbilityLab for 25 years. Her primary clinical work is with children with cerebral palsy and spasticity management. She is past president of the American Academy of Cerebral Palsy and Developmental Medicine. Her research interests have been in management of spasticity and have obtained United Cerebral Palsy grants to evaluate the impact of Botulinum Toxins on the child as well as dance for motor learning and the child with cerebral palsy. She has collaborated with the Rehabilitation Institute of Chicago Bioengineers on measurement of Hypertonia and worked with the National Institute on Disability and Rehabilitation Research, Rehabilitation Engineering Research Centers grant "Technologies for Children with Orthopedic Disabilities."

Job Titles:

• Chief of Functional and Applied Biomechanics Section, NIH ( Dr. Damiano Is Serving in a Personal Capacity )

Diane Damiano Chief of Functional and Applied Biomechanics Section, NIH (Dr. Damiano is serving in a personal capacity)

Job Titles:

• Member of the Expert Steering Committee
• Community Engagement Coordinator Ireland

Edel Davin-Power comes to the Foundation as the Community Engagement Coordinator for the Irish project. A mother of three little boys under ten, she has a wealth of lived experience navigating the Irish health and education system. Edel is an honours graduate in International Commerce from University College Dublin. She also holds a postgraduate diploma in Human Resources. Early in her career, Edel redirected to primary school teaching, and also completed a post graduate diploma in same. Having worked as a primary school teacher for over 20 years, Edel specialises primarily in the field of SEN (special educational needs). Edel's passion is in seeking out the full and rounded potential in every individual, striving to break down barriers to achievement and inclusion, and ultimately working towards ensuring that every life can lived to the fullest.

Job Titles:

• Adjunct Professor
• President of the American Academy of Cerebral Palsy
• Professor

Eileen Fowler, Adjunct Professor in the UCLA Department of Orthopaedic Surgery, Director of Research and Education for the Center for Cerebral Palsy at UCLA, and Director of the Kameron Gait & Motion Analysis Laboratory Dr. Fowler is a Professor in the Department of Orthopaedic Surgery at the University of California, Los Angeles (UCLA). She received her degree in Physical Therapy from Northeastern University in Boston and her PhD in Kinesiology from UCLA with a major in Biomechanics and a minor in Motor Control. She holds the Peter William Shapiro Chair and is the Director of Research and Education for the Center for Cerebral Palsy at UCLA and the Director of the Kameron Gait and Motion Analysis Laboratory. She is a faculty member in the Tarjan Center for Disabilities at UCLA, a University Center of Excellence, and the Center for Duchenne Muscuar Dystrophy at UCLA. Dr. Fowler has over 30 years experience in the evaluation and treatment of pediatric onset disabilities. She was a co-founder of the Center for Cerebral Palsy at UCLA, a multi-disciplinary program to meet the medical needs of children and adults. Her research examines the effect of exercise, pharmacological and surgical interventions on spasticity, strength, gait and function. She was lead investigator for a multi-site study: Pediatric Endurance and Limb Strengthening (PEDALS) for children with CP as part of PTClinResNet funded by the Foundation for Physical Therapy. A focus of her current research is reduced selective motor control in CP. Her team developed the Selective Control Assessment of the Lower Extremity (SCALE), a clinical assessment. In addition, her team uses dynamic systems modeling, biomechanical models and robotics to identify selective motor control strategies during gait. Her current research explores the effect of selective motor control intervenitons on motor function and corticospinal tract integrity, using brain imaging technology. Other areas of research in CP include gaming technology for children with dyskinetic CP and Women's Health. Dr. Fowler is the President of the American Academy of Cerebral Palsy and Developmental Medicine for 2015-2016. She is an Associate Editor for Pediatric Physical Therapy. She received the Jack Walker Award from the American Physical Therapy Association for the best clinical research article in Physical Therapy, which refuted the premise that strengthening exercise performance increases spasticity in children with CP (2001). She received the Research Award from the American Physical Therapy Association Section on Pediatrics (2006) and the White Swan Award from the AbilitiesFirst Foundation (2003).

Job Titles:

• Member of the Expert Steering Committee
• Chief Executive, Children 's Health Ireland

Job Titles:

• Business Consultant and Ex Vice President at Analog Devices, Boston, Board Member CP Foundation

During a 30-year career with Analog Devices Inc., Gerry held several senior management positions including VP Supply Chain & Planning, VP Quality and VP R&D Productivity. He is the founder and CEO of Mayorstone consulting and author of "R&D Productivity. How to target it. How to measure it. Why it matters". He holds a Bachelor of Science (Electronics) degree from the University of Limerick, Ireland. Gerry's introduction to the CP Foundation was through his friendship with Denis and Lily Collison and his admiration for their son, Tommy.

Job Titles:

• Chairman of the Board
• Co - Chair of SIFMA / AMF Derivative Operations Committee

Ila Eckhoff, CPA, recently retired as Managing Director, from Global Investment Operations - Derivative Operations. She was responsible for leading BlackRock's Industry and Counterparty Management strategy for derivatives and collateral. Ms. Eckhoff served on a number of committees, including the Business Operations and Technology Leadership Committees, Technology and Operations DEI Committee and Government Relations Steering Committee. She is also a founder and MD sponsor of the Ability at Blackrock Network (ABN). Ms. Eckhoff had several roles at Blackrock, most recently managing the Market Initiatives team coordinating operational initiatives associated with Dodd Frank and EMIR commitments for Over the Counter (OTC) derivatives working alongside the market structure, portfolio management, technology, and legal teams. Prior to that, Ms. Eckhoff managed BlackRock's US Derivative Operations and Trading Operations Groups where she was responsible for collateral management and trade confirmation across fixed income and equity, swap payments and OTC legal confirmations. In addition, she has worked to enhance the firm's system capabilities and develop the operations infrastructure for derivatives. Ms. Eckhoff has also developed and implemented collateral and swap payment processes and procedures for alternative products at the firm. Prior to joining BlackRock in 2000, Ms. Eckhoff managed the New York Collateral teams at both Barclays Capital and Credit Lyonnais, handling all interest rate, FX and equity derivatives. In this role, she was responsible for coordinating global collateral management for all US clients working with legal, tax and regulatory reporting. At Credit Lyonnais, she also managed the Accounting Policy Group where she developed and implemented the Bank's procedures on collateralized trading. Ms. Eckhoff is co-chair of SIFMA/AMF Derivative Operations Committee, a member of the ISDA Collateral and Credit Steering Committees and a member of the SIFMA AMG Committee. Ms. Eckhoff earned a BA degree in economics from Brandeis University in 1982 and an MBA degree in Accounting from Baruch College in 1990.

Job Titles:

• Secretary

Jen Lyman's passion lies in ensuring that individuals with complex cerebral palsy have the opportunities to actively participate in meaningful experiences that promote self-expression, optimal health, lead to lasting friendships, and that are challenging, fun, inclusive and demonstrate to others that those with disabilities should not be excluded. She is the parent of teenager, Bower, who has complex, quadriplegic cerebral palsy, including visual and communication impairments. He is a healthy, happy New Orleanean who loves festivals, working out, eating sushi, swimming, school, and so much more. Prior to the birth of her son, Jen's academic training and career path were focused on breaking down barriers to participation for those with disabilities. With a career background both in therapeutic recreation and in case management serving children and adults with developmental and psychiatric disabilities, she has worked in a variety of inpatient, outpatient and community settings, coordinating care and promoting social, recreational and leisure activity participation. Jen serves as volunteer coordinator of the Cerebral Palsy Collaborative, to advocate for cerebral palsy research funding at national level. She the past Chair of the American Academy for Cerebral Palsy and Developmental Medicine Community Council and she serves on the board of Camp Dream Street.

Job Titles:

• Senior Advisor
• Senior Advisor, U.S. Olympic

Kara is a Senior Advisor, consulting at the intersection of impact and innovation in sport. She has advised leaders at the U.S. Olympic & Paralympic Committee, LA28, Riot Games, and two startups backed by Nike Founder Phil Knight. Previously, she was a Global Director at Visa, leading partnerships with Olympians and Paralympians. She is also an author, publishing her first book titled "Pure Grit: Stories of Remarkable People Living with Physical Disability" with co-author Lily Collison in 2021. Kara received a dual Bachelor of Arts in Business and Spanish at the University of Oregon. After a decade in New York and San Francisco, she currently resides in Bend, Oregon with her husband and three awesome kids.

Job Titles:

• Member of the Expert Steering Committee
• Program Director
• Board Member, CP Foundation

Lily Collison, whose son Tommy has CP, is a Cerebral Palsy Foundation board member and a long-time advocate for CP care in Ireland. "Cerebral Palsy is the most prevalent childhood acquired physical disability," she said. "Due to outdated systems and inappropriate interventions, lives are often significantly and unnecessarily compromised. This has long-term social as well as economic implications." Collison went on to explain that the CP Programme aims to become a world-leader in CP care within five years. "It's a challenging but achievable goal if we all work hard and smartly together." she said. Lily Collison is Program Director at Gillette Children's Healthcare Press. Lily co-authored "Pure Grit: Stories of Remarkable People Living with Physical Disability" with Kara Buckley, Senior Advisor, U.S. Olympic and Paralympic Committee. "Pure Grit" tells the stories of nineteen people across the globe, who grew up with physical disability and are living and thriving in diverse fields. Published in 2021, this book is available on Amazon, and all proceeds go to research. Lily's adult son has spastic diplegia. In 2020, she wrote "Spastic Diplegia-Bilateral Cerebral Palsy" in conjunction with senior medical staff at Gillette Children's. This book is also available on Amazon, and again, all proceeds go to research. Lily previously completed a research master's - a case study on SEMLS, rehabilitation and outcome evaluation.

Michelle Kassner began her career working in the Finance Department of Sotheby's. Pursuing her passion for horticulture and garden design she joined Plant Specialists, Inc. As the Manager of the landscape division, responsible for the design, installation, and maintenance of Penthouse and Townhouse gardens in New York City. In 1988, Michelle joined her family's business, Liberty Travel and GOGO Worldwide Vacations. Over the course of twenty years, she held various executive positions, including CEO. In 2008, the company was sold to an Australian company. Michelle's latest venture is the launch of a restaurant in New York's West Village, 99 Bank, a gluten-free local and seasonal restaurant. Michelle is a graduate of Hamilton College. She lives in NYC with her two daughters.

Job Titles:

• Medical Director and Co - Head, Grace Centre for Newborn Intensive Care

Nadia Badawi Medical Director and Co-Head, Grace Centre for Newborn Intensive Care. The Children's Hospital at Westmead and CP Alliance Chair of Cerebral Palsy Research, The University of Sydney.

Job Titles:

• Director of Early Development and Cerebral Palsy Research, Emory University Department of Paediatrics, Atlanta

Job Titles:

• Investor
• Treasurer

Patrick Downes connection the Cerebral Palsy Foundation started with his love of his nephew Finnigan who was born w Cerebal Palsy. CPF is thrilled he has joined the Board of Directors in 2017 to help move our mission forward. Previously he has served as a volunteer at Sloan Kettering Memorial, Board of Trustees at the Stanwich School and ARTPORT, a non for profit art consultant. Mr. Downes is an investor on behalf of pensions, endowments and foundations in the United States residential housing markets. He has a track record of success as a business builder, entrepreneur and Private Equity fund raising. Currently he is the managing principal for D Capital LLC, a Private Equity Fund consultant in Greenwich Ct. Previous professional experience includes being the Co-Founder, President at COO Premium Point Investments LP, where he helped build a Barron's Top 100 Private Equity/Hedge fund. Prior to that he was a Director at Deutsche Bank Securities Inc. in the Institutional Sales Team. Mr. Downes started his career at Salomon Brothers. He holds a Bachelor of Science degree from Cornell University.

Job Titles:

• Executive Director
• Member of the Expert Steering Committee
• Executive Director, CP Foundation

Rachel Byrne is the Executive Director at the Cerebral Palsy Foundation. She has been working in the field of pediatric rehabilitation and cerebral palsy research for the past 14 years. Rachel has a background in physical therapy, with a particular interest in neuroplasticity and motor learning. Her early career as a clinician delivering physical therapy services in schools, hospitals and private practice is underpinned by her research interests focused on knowledge translation and the impact on a person's ability to participate in the community across the lifespan. At the Foundation, she has continued her research interest in evidence-based practice, knowledge translation, early detection and interventions across the lifespan and population studies for cerebral palsy. Rachel was instrumental in developing the Just Say Hi inclusion curriculum which is now being taught nationally. In the last 12 years she has given multiple presentations at international conferences and managed large multisite research projects.

Job Titles:

• Member of the Expert Steering Committee