Tennessee Titans General Manager Jon Robinson will talk about his experience as a parent to a special needs child, and how he remains family focused in a high profile career.
Laura King Edwards is a writer, rare disease advocate and marketing professional.
Laura’s younger sister was diagnosed with a rare, fatal brain disorder called Batten disease in 2006. Refusing to accept the status quo, Laura became a passionate activist, co-founding a non-profit organization, Taylor’s Tale, at age 24.
Taylor’s Tale became a top supporter of infantile Batten disease research and today is known worldwide for its contributions to science, awareness and advocacy on behalf of the estimated one in 10 Americans with a rare disease. Laura serves as the charity’s vice president and writes the blog.
A graduate of the University of North Carolina at Chapel Hill with a BA in English, Laura minored in creative writing (winning the William H. Hooks award for creative writing) and has wanted to be an author since she penned her first story before starting kindergarten. Writing is in her blood; Laura is a cousin of the late Reynolds Price, an American poet, novelist, dramatist, essayist and James B. Duke Professor of English at Duke University. Samuel Clemens, better known as Mark Twain, is on her family tree.
Linda Phillips will discuss her upcoming novel in verse “Behind These Hands” which is loosely based on her time working with Batten children as a teacher. Behind These Hands shows how the life of a teenage piano prodigy is upended when her two younger brothers are diagnosed with Batten, a rare neurodegenerative disease.
Jennifer joined Horizon Government Affairs in December 2008 as Vice President, focusing on legislative and regulatory developments within the pharmaceutical, biotechnology and medical device sectors. Prior to joining Horizon, Jennifer was Vice President of Healthcare Research at a mid-sized healthcare advisory and financial services firm. In this capacity, she managed over 100 clients, including hedge funds, mutual funds, investment advisers and healthcare corporations and was responsible for anticipating and translating legislative and regulatory catalysts within all sectors of the healthcare marketplace.
Jennifer also spent several years on Capitol Hill as a legislative assistant to former Congressman James Greenwood (R-PA). Prior to that, Jennifer served as professional staff on the Judiciary Committee in the Pennsylvania House of Representatives, where she helped to develop Megan’s Law. She has held the Series 7 (General Securities Representative), Series 65 (Uniform Investment Advisor) and Series 87 (Registered Research Analyst) securities licenses.
Jennifer received her Bachelor of Arts in Political Science and History from Millersville University of Pennsylvania, and Master’s Degrees in both American Government and International Relations from Temple University.
BLYTH TAYLOR LORD
The genesis of Courageous Parents Network is in the cumulative experience of bereaved parent and pediatric palliative care advocate Blyth Lord. Following her daughter Cameron’s death in 2001 from a Tay-Sachs, Blyth began offering her perspective on the needs of families caring for children with life-limiting illness and how providers can best meet these needs. Blyth represented the parent perspective on panels and in workshops with pediatric residents and specialists. Drawing on more than twenty years of experience as a television producer (ABC News, WGBH), she produced an award-winning film with the American Academy of Pediatrics to help train doctors in how to work with families from the time of diagnosis through to the end-of-life. She also produced an educational film, funded by a grant from Genzyme/Sanofi, about parenting children with life-limiting illness.
Blyth has worked with leaders in the field of pediatric palliative care, such as doctors, nurses and social workers, patient advocacy groups, palliative and hospice care providers, bereaved families, and families whose children are currently living with life-limiting illness. She serves on the board of National Tay-Sachs and Allied Disease association (where she helps oversee NTSAD’s family support services), as a board member of a bereaved parent support group with The Children’s Room, and as co-chair of the Parent Working Group for the American Academy of Pediatrics’ Section on Hospice and Palliative Medicine.
Blyth is mom to 3 daughters, Taylor, Cameron and Eliza. She and her husband Charlie reside in Newton, MA.
Shortly after her second child, Ben was diagnosed with Sanfilippo Syndrome, a lysosomal storage disorder, Jennifer and her husband formed Ben’s Dream: the Sanfilippo Research Foundation. As president of the Foundation for the past 17 years, Jennifer has worked with researchers, patient advocacy groups and foundations worldwide to fund and advance gene therapy for Sanfilippo Syndrome that is now is clinical trials in the U.S., Spain and Australia. Sadly, these efforts did not come to fruition in time for her son Ben, who passed away in 2014. Jennifer was recognized by Global Genes RARE Champion of Hope and the Boston Celtics Heroes Among Us awards for her contributions. She has spoken about the patient journey at Massachusetts General Hospital, New England Regional Genetics Group, and UMass Boston Medical Center as well as at a number of biotech companies.
Through Ben, Jennifer became involved in advocating for educational programs for special needs children. This same commitment drove her 15-year career as a development consultant. She has worked as a Development Director of a therapeutic horseback riding program and more recently as a fundraising consultant to a school for the deaf and several other small, advocacy non-profits. She became part of the Courageous Parents Network family through her palliative care doctor when she and her husband agreed to share their story and the impact of palliative care in Ben’s care in a CPN video. Understanding the power of sharing the lived family experience and creating a network of parents supporting one another, Jennifer served on the CPN Parent Advisory board before joining the staff. Her recent work developing guided pathways draws upon her M.Ed and middle school teaching experience.
Jennifer is mother to three – Noah, Ben and Isabelle. She and her husband Stuart live in Wellesley, Ma with their much loved Newfie, Truman.
Andrea Boerger is a pediatric outpatient speech-language pathologist at Nationwide Children’s Hospital in Columbus, Ohio. She has been practicing speech-language pathology for 9 years. She has experience in working with children with language, articulation, dysfluency, and feeding difficulties. She also specializes in working with children who are non-verbal and have augmentative and alternative communication needs.
Jeni Goddard is a pediatric outpatient occupational therapist at Nationwide Children’s Hospital in Columbus, Ohio. She is the primary occupational therapist within the hospital’s Batten’s Clinic. She has been a practicing occupational therapist for 7 years with experience working with children with low vision, motor planning difficulties, and sensory concerns.
Katya Herman is a Neurologic Music Therapist, and a graduate of Berklee College of Music and Cambridge University. She spent the last two years working at Massachusetts General Hospital, providing group and individual music therapy for patients across the lifespan, and with diverse needs, including fragile health, psychiatric diagnoses, profound developmental disabilities, cognitive challenges, and highly complex social histories. This experience with a variety of clinical populations has deepened her understanding of how music can – when wielded with precision and care – be used to help clients reach their goals, while celebrating their strengths and selfhood.
She is currently working as a Music Therapist at The Royal London Hospital, and as the Research Officer for a study on the impact of music therapy for children and young people with Batten disease, led by Adam Ockelford.
Katya is a board certified music therapist (MT-BC) in the USA, and is registered by the Health and Care Professions Council (HCPC) in the UK.
ILAN IRONY, MD
Ilan Irony, M.D. is the Acting Director for the Office of Orphan Products Development (OOPD). Dr. Irony received clinical research training at the University of California, San Francisco (UCSF) and Internal Medicine training at Georgetown University Hospital. Prior to joining FDA, Dr. Irony worked in endocrine-related clinical research at the National Institutes of Health (NIH) and in private medical practice specializing in Internal Medicine and Endocrinology. Dr. Irony joined the Food and Drug Administration (FDA) Center for Biologics Evaluation and Research (CBER) in 2000 as a clinical reviewer. He also worked in the Endocrine Division within the Center for Drug Evaluation and Research (CDER) as a reviewer and team leader. In 2011, he returned to CBER as the branch chief, and in 2017 became Deputy Director in the Division of Clinical Evaluation and Pharmacology / Toxicology in the Office of Tissues and Advanced Therapies. Over the course of his career at FDA, Dr. Irony has reviewed many applications intended for treatment of rare disorders, has presented on development of orphan products and participated in activities with rare disease organizations.
REBECCA WHITING, PhD
Dr. Whiting is an Assistant Research Professor of Ophthalmology at the University of Missouri Health Center. Her areas of expertise include retinal degeneration, large animal models, electroretinography, pupillography, and in vivo retinal imaging.
JONATHAN MINK, PhD
Dr. Mink is a Pediatric Neurologist who specializes in movement disorders starting in childhood. He was attracted to pediatric neurology when he was a medical student and realized that he had an intellectual interest in the brain but enjoyed the challenges and rewards of caring for children. As a movement disorders specialist, he cares for children with a variety of conditions that impair voluntary movements, cause involuntary movements, or both. Such conditions include dystonia, chorea, tics, myoclonus, tremor, stereotypies, parkinsonism, and combinations of these such as may occur in conditions like cerebral palsy. In addition to movement disorders, neurodegenerative diseases are also a focus of my clinical practice.
His research has been focused on understanding brain mechanisms involved in the control of movement or where disorders cause involuntary movements. The research involves neurophysiology, direct measurement of movement abnormalities, rating scales, and longitudinal assessments over the course of development and disease. More recently his work has included clinical trials and studies of factors that impact the function of children with movement disorders.
In addition to his clinical practice and research, he directs the Child Neurology residency at the University of Rochester. He serves on a number of advisory boards including the Tourette Syndrome Association, the Dystonia Medical Research Foundation, the Batten Disease Support and Research Association, the NINDS Board of Scientific Counselors, and the Pediatric Advisory Committee of the FDA. He is also an Associate Editor of Neurology.