CureDuchenne

The CureDuchenne 2021 FUTURES National Conference is a two-day event focused on bringing education, resources, and connection to the Duchenne community in a family-friendly environment. This year’s conference agenda and special events will focus on Quality of Life. CureDuchenne will be offering multiple social events, robust presentations and panel discussions, a symposium, a resource fair, an e-gaming lounge and childcare.

From: 10/08/2021 - To: 10/10/2021

All day event

1501 Gaylord Trail, Grapevine, Texas, United States of America

Featured Speakers

Taylor Berhow, LCSW, MPA
Social Worker | Behavior Health Specialist University of Utah Specialty Clinics Imaging and Neurosciences Center
Taylor is a licensed clinical social worker who specializes in working with individuals and families affected by rare and chronic neurological conditions. She currently works in a multi-disciplinary setting at the University of Utah Imaging and Neurosciences Center providing mental health support and treatment to affected individuals using a variety of evidenced-based therapeutic modalities.
Tiffany Cook, MS, CCC-SLP
Senior Director, CureDuchenne Cares, CureDuchenne
Tiffany Cook, MS, CCC-SLP is a nationally certified Speech-Language Pathologist with over twenty years’ experience in the public-school setting. Tiffany’s son, Wil, was diagnosed with Duchenne in 2007 and subsequently she was confirmed as a carrier. According to Tiffany, “Duchenne challenges us to think and do things differently.” From Duchenne, she has learned to live in and for the moment every single day. Her professional career inspired her to cultivate communicative environments that foster the social and emotional well-being of people. As the Senior Director of CureDuchenne Cares, Tiffany is dedicated to helping families and others within the community to find the silver linings. Tiffany resides in Dallas with her husband, son and daughter.
Missy Dixon, PhD., MS
Visiting Assistant Professor, Department of Pediatrics Divisions of Pediatric Neurology, Psychiatry and Behavioral Health, University of Utah
Missy Dixon, PhD, MS is a Visiting Assistant Professor in the Department of Pediatrics, Divisions of Pediatric Neurology, Psychiatry and Behavioral Health. She earned her PhD in counseling psychology, and her master’s degree in professional counseling from the University of Utah. Dr. Dixon is a member of a multidisciplinary clinical team serving children and adolescents with neuromuscular disorders. Dr. Dixon’s research is focused on cognitive development and function, and functional connectivity and neural networks in neuromuscular diseases. She works with an interdisciplinary team to identify central nervous system involvement in myotonic dystrophy and other neuromuscular diseases using neurocognitive and neuroimaging outcome measures. Additionally, she researches the psychosocial impact of living with muscular dystrophy and neurogenetic disorders.
Michael Kelly, PhD.
Chief Scientific Advisor, CureDuchenne
Dr. Kelly is a senior pharmaceutical executive and brings more than 30 years of experience in drug discovery and development to the organization. As CureDuchenne’s Chief Scientific Advisor, he is responsible for advancing drug development programs and identifying new drug targets that exhibit potential to transform the treatment of Duchenne muscular dystrophy.
Paige Lembeck, PhD.
Assistant Professor of Clinical Child Psychology, Yale Child Study Center
Paige Lembeck, Ph.D. is a Pediatric Psychologist and Assistant Professor of Clinical Child Psychology at the Yale Child Study Center. Dr. Lembeck provides clinical services within the Yale Child Study Center’s Outpatient Psychiatric Clinic and within Yale New Haven Hospital’s Pediatric Neurology Specialty clinics, where she collaborates with other providers to comprehensively treat youth with chronic headaches, muscular dystrophy and other neurological conditions. Dr. Lembeck’s current clinical and research interests include non-pharmacological pain management and the facilitation of youth and families’ adjustment to acute and chronic illness. Prior to coming to Yale in 2017, Dr. Lembeck obtained her doctoral degree in school psychology from the University of Nebraska-Lincoln. She completed her pre-doctoral internship and post-doctoral fellowship at St. Jude Children’s Research Hospital in Memphis, TN, where she specialized in conducting assessment, consultation and therapy with youth with cancer and other catastrophic diseases.
Doug Levine, PT
CureDuchenne Certified Physical Therapist, CureDuchenne
Doug Levine, PT, is the owner of Growing Places Therapy Services, PLLC. A physical therapist since 1997, he has primarily focused on pediatrics and Duchenne muscular dystrophy. Since 2006, Growing Places has served over 500 children and their families, providing pediatric physical, occupational and speech therapies in the home, school and daycare settings.
Hawken Miller
Writer, BioNews Services
Hawken Miller is a 24-year-old with Duchenne Muscular Dystrophy. He is a journalist by trade and is a speaker, columnist, tweeter and videographer on the side. Hawken works for BioNews Services, writes a weekly column called “Hawk’s-Eye View” for Muscular Dystrophy News Today and is a spokesperson for CureDuchenne. He graduated from the University of Southern California with honors in May 2019, where he majored in journalism. While at USC, he was an editor at The Daily Trojan and USC Annenberg Media. Hawken interned at KTLA 5 News, the Sacramento Bee and The Orange County Register. When he isn’t writing, Hawken loves talking about, playing and watching video games and everything Star Wars.
Tom McNalley
Pediatric Rehabilitation Physician, UC San Francisco
Tom is an associate professor of pediatrics at UC San Francisco, where he practices pediatric rehabilitation and palliative medicine. He has cared for patients with neuromuscular disease both at Seattle Children's Hospital and in the Bay Area since 2016. As a palliative medicine physician, he helps families navigate uncertainty and optimize quality of life in the face of life-limiting illness. He has three grown children, and lives in Oakland.
Eric Olson, PhD.
Chief Scientific Advisor, Vertex Pharmaceuticals
Eric Olson, PhD is the founding Chair of the Department of Molecular Biology at The University of Texas Southwestern Medical Center. He also founded the Center for Regenerative Science and Medicine at UT Southwestern, which is advancing new strategies for organ regeneration. In addition, Dr. Olson He also directs the Wellstone Clinical Research Center for Muscular Dystrophy Research at UT Southwestern. He holds the Robert A. Welch Distinguished Chair, the Pogue Chair Distinguished Chair in Cardiac Birth Defects and the Annie and Willie Nelson Professorship in Stem Cell Research. Eric Olson and his trainees discovered many of the key genes and mechanisms responsible for development of the heart and other muscles. His laboratory also unveiled the signaling pathways responsible for pathological cardiac growth and heart failure. Olson’s discoveries at the interface of developmental biology and medicine have illuminated the fundamental principles of organ formation and have provided new concepts in the quest for cardiovascular therapeutics. His most recent work has provided a new strategy for correction of Duchenne muscular dystrophy using CRISPR gene editing. Dr. Olson is a member of the U.S. National Academy of Sciences, the Institute of Medicine, and the American Academy of Arts and Sciences. His work has been recognized by numerous awards, including the Basic Research Prize, the Research Achievement Award and the Eugene Markwald Mentorship Award from the American Heart Association. Olson’s other awards include the Pasarow Medical Research Award, the Pollin Prize, the Passano Award, the Conklin Medal, and the March of Dimes Prize in Developmental Biology. In 2009, the French Academy of Science awarded Dr. Olson the Lefoulon-Delalande Grand Prize for Science. He is among the most highly cited scientists in the world, with his work having been cited over 100,000 times in the scientific literature. Eric Olson has co-founded multiple biotechnology companies to design new therapies for heart muscle disease. Most recently, he founded Exonics Therapeutics together with CureDuchenne Ventures, which is advancing gene editing as a therapy for Duchenne muscular dystrophy. Exonics was recently acquired by Vertex Pharmaceuticals. In his spare time, he plays guitar and harmonica with The Transactivators, a rock band inspired by the Texas troubadour, Willie Nelson, who created the Professorship that supports his research.
Lianna Orlando, PhD.
Senior Director of Research, CureDuchenne
Lianna Orlando, PhD, is CureDuchenne’s Senior Director of Research, where she helps identify and evaluate strategic investments aimed at developing treatments for Duchenne Muscular Dystrophy. Prior to CureDuchenne, Lianna was the Muscular Dystrophy Association (MDA), where she oversaw basic, translational, and clinical grant programs, including MDA’s venture philanthropy program, and Fidelity Biosciences Research Initiative (FBRI), focusing on funding research programs in neurodegenerative diseases. Before leaving academia, Lianna was a junior faculty member in the Neurology Department at Massachusetts General Hospital. She completed her doctorate in Neurobiology from Harvard University, and a select master’s degree in Medicine from Harvard Medical School. She has taught both undergraduates and medical students at Harvard, and worked as a freelance science writer for disease foundations and scientific journals. She holds B.S. degrees in Chemistry and in Magazine Journalism from Syracuse University (Summa Cum Laude/Phi Beta Kappa).
Marissa Penrod
Co-Founder, Duchenne Family Assistance Program
Marissa Penrod is the co-founder of the Duchenne Family Assistance Program, affectionately referred to as “D-FAP”. Marissa and other co-founder, Kelly, each have sons with Duchenne. Kelly is also the founder of Little Hercules Foundation and Marissa is the founder of Team Joseph. Both organizations originally had a singular focus of funding research and have contributed millions of dollars to Duchenne research. While they believe in the promise of future treatments and will continue to fund research, they also saw the need to help families right now, in this moment, in order to eliminate stress and suffering. With that purpose, they co-founded the Duchenne Family Assistance Program. The program has two key priorities – to offer families financial assistance with expenses related to the care of a child or young adult with Duchenne, and to provide help and expertise to families who need access to recommended treatments and equipment, clinical care, and social services. The Duchenne journey should not be made worse because you’re fighting insurance battles and going without important medical services, care and support. Marissa and Kelly and their D-FAP team believe that every child battling Duchenne deserves resources and education, needed equipment, approved treatments, and access to the best care. Every family deserves support and partnership, so they don’t have to navigate a complex medical system alone.
Jennifer Wallace Valdes, PT
CureDuchenne Certified Physical Therapist, CureDuchenne
Jennifer Wallace Valdes, PT, draws from 17 years of experience in pediatrics and with an emphasis in the muscular dystrophy population. She has been invited to present current treatment topics and advances at Duchenne conferences, Academy of Pediatric PT Annual conference and has taught continuing education to healthcare professionals since 2009. She is the owner of Duchenne Therapy Network, a private PT business and Physical Therapy Director at CureDuchenne Cares. She continues to practice and provide evaluation, treatment and consultations for those with Duchenne and Becker muscular dystrophy.
Brenda Wong, MD
Director, UMass Duchenne Muscular Dystrophy Program, University of Massachusetts Medical School, Worcester, MA
Dr. Wong was trained in pediatrics in Singapore and the United Kingdom prior to her completion of a Pediatric Neurology fellowship at the Cincinnati Children’s Hospital Medical Center. She also received training in Pediatric Neuromuscular medicine at the Hammersmith Muscle Clinic in London, UK. Dr. Wong established the Interdisciplinary Neuromuscular Care Center at Cincinnati Children’s Hospital Medical center in 2000 to provide optimal integrated care for patients with neuromuscular disorders, most of whom have Duchenne muscular dystrophy. Dr. Wong delivers team based, collaborative, coordinated, patient and family centered care for her patients with a team of care providers from various specialties focused on the multi-systemic problems of her patients. Dr. Wong transitioned in May 2018 to the University of Massachusetts in Worcester, MA to focus on their DMD care and research program.
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