https://www.adcy5.org/adcy5 daily 0.75 2024-06-20 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766353843-6GWPLSI5REEFIDHVMBSH/gene_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766370087-R0E30LU8MDGHWU032O14/enzyme_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766395190-D187UROICYDV73RGCJ4Z/autosomal_offwhite.png ADCY5-related movement disorder https://www.adcy5.org/home daily 1.0 2026-06-03 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/f6fa8875-982f-47d1-93f1-2f7ed82f096e/HomeSlideshow.gif ADCY5-related movement disorder - ADCY5.org is dedicated to those living with Adenylyl cyclase 5 (ADCY5)‐related movement disorder (ADCY5‐RMD), by supporting affected families, clinicians providing care, and researchers studying ADCY5. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766242875-NU237D50B0UE7BQQLLKL/donate_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766302330-K3OFMC56DXOWTETQN8ID/testing_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766263595-6R84GSCI1YFA76NJDXBM/registry_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766318766-UFUHCK642F49JNRJ1O7R/research_offwhite.png ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613733167550-DMIDZIW2DDCX3HYP73T5/community2.png ADCY5-related movement disorder - Community Our community is made up of patients, their families and caregivers, clinicians, and researchers. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613733214585-JXTIOVTS6PY0N0JZRTU8/research2.png ADCY5-related movement disorder - Research ADCY5.org supports research happening now. Share your journey, answer surveys, provide medical records so more can be learned about the disease. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613733256273-CPQFU4Q00M9NF5SFHZ94/resources.png ADCY5-related movement disorder - Resources There are resources available for you as you navigate Adenylyl cyclase 5 (ADCY5)‐related movement disorder (ADCY5‐RMD) and rare disease. https://www.adcy5.org/maya daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735452782-2NOURO8Y2DJD37JYS4N1/maya01.jpg Maya - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735452805-ACTSV0RJ26A5I3Q7JD5R/maya03.jpg Maya - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735451425-X6Z15RP64WT9S54RRGKW/maya02.jpg Maya - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258827630-JMMOFKJGFYMY2TE448KQ/adryan.png Maya - 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ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292340906-8M373DDYO796HAHJTG0Z/grace.png Lilly - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735573997-DB4BZQRMM2ZQPDYL7MIB/maya.png Lilly - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292363115-URWZQLT2DSBTZMMTF793/kendall.png Lilly - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766670603-5CFMM91MKVV8S9MMNSYZ/registry_offwhite.png Lilly - ADCY5-related movement disorder https://www.adcy5.org/registry daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766836577-8ZMBK43I79JM1GRGD80V/testing_offwhite.png Registry - ADCY5-related movement disorder https://www.adcy5.org/community daily 0.75 2026-03-23 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291235187-H1MQNJ88ND7DBXXGW0W9/anna.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616160915001-3VQNQ1T9FIIZ46EMOF3O/enzo.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291337251-391Q0NUUFAMPIXCZ75VA/laura.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/e53483f2-af89-481b-bee2-9860f7622c36/Grace.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258657504-XHO150ZHVOP4ED329ZO7/adryan.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291456041-7Q7MQM6GDX4CKQDH0WVJ/kendall.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291847806-DI8ZD5Z9P4Q1GGR5O0O7/maya.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/c03e3446-af10-458d-80d0-aa257565b570/L+Grossman+Headshot+2023.jpg Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291909080-WZ2OXHG8384LM3ON4RDN/olive.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291761011-HZTBGH7W1JJQJX28S1YT/francesca.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/3e408cc2-5ca7-41d2-87af-dbd997557809/Meredith.png Community - ADCY5-related movement disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616160938369-060RTQQEALHXWB0CDLO0/hugo.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291739753-CRZJADBNCHOD0BPBA5QS/ginevra.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258684649-1HKSQQDFZVLVWN0JXYDU/djaro.png Community - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734631124-627XREHXC4VJQHOW3Z7C/lillynews.png Community - ADCY5-related movement disorder - Lilly Global Genes - Coming Home Due to COVID-19 RespectAbility - The Value of Being Unbiased RespectAbility - Eye of the Lioness The Quaker Campus - Letter to the Editor Medium - Great Expectations: How Patient Advocacy Gave Me Hope National Geographic - “We Gain Hope” The Story of Lilly Grossman’s Genome The Atlantic - How Genome Sequencing Creates Communities Around Rare Disorders LA Times - Family hopes genome test will help cure girl’s mystery disease LA Times - Gene mutation didn’t slow down high school senior https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734678916-72NTZ6M9JAM23GV38N6M/grace.png Community - ADCY5-related movement disorder - Grace YouTube - Grace and Fran Interview with Weekend Sunrise7 News Sydney - Caffeine helping to treat young patients in Sydney with neurological disorders 7 News Sydney (Instagram) - The Children's Hospital at Westmead has stumbled upon a remarkable treatment for a group of young patients with a rare neurological disorder. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766466759-LA4ECWAQGCXYW962DD36/registry_offwhite.png Community - ADCY5-related movement disorder https://www.adcy5.org/francesca daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198562-EAJSBIFWA072RUGIVEZ5/francesca01.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198662-MEUXF2YWFWZ6B4LCZ9MT/francesca05.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198352-9STI8ORDLXUEMIRXULKR/francesca04.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198399-WJY78NUY1DU5QWXI9876/francesca03.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735199758-89FVRZ50VM4DAK38EIM4/francesca02.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198771-C2MK8A2E8MOJDFQV5W8E/francesca07.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613735198305-ND792VHCFCW9E2GI25NQ/francesca06.jpg Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734481367-QJJ89KH3OHHNCUOUDRQJ/maya.png Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734495183-IGJF0WD8FNGQQDB4JUY6/lilly.png Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614291724620-E9KE17T0KE6TEJCR8IWB/grace.png Francesca - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766581235-ZANFS9QFQ3LCGRLAB2GU/registry_offwhite.png Francesca - ADCY5-related movement disorder https://www.adcy5.org/contact daily 0.75 2023-10-16 https://www.adcy5.org/donate daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738901223-4SQB22UEMRIQDXVAOEG6/donate_lg.png Donate - ADCY5-related movement disorder https://www.adcy5.org/about-us daily 0.75 2026-06-23 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613737989095-FIIVQ17GIJ02BMFUGW2W/44fe35b774478aeeaadbbda7db79866c.jpg About Us - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738489918-NTIGCF6MUP5E5ZKG537E/daniel.png About Us - ADCY5-related movement disorder - Dan Bradbury Chairman Dan is a Life Sciences Executive with over 30 years of experience creating and implementing strategies that transform businesses, bring novel medicines to market and maximize shareholder value. He is the Managing Member of BioBrit, LLC, a Life Sciences Consulting and Investment Firm. Dan is the former President, Chief Executive Officer and Director of Amylin Pharmaceuticals, a biopharmaceutical company based in San Diego, CA, focused on metabolic diseases. During his 18-year tenure at Amylin, the company launched three first-in-class medicines, including the first once-a-week therapy to treat diabetes and was listed on the Nasdaq 100. He served as Amylin’s Chief Executive Officer from March 2007 until its acquisition by Bristol-Myers Squibb Company in August 2012. Before joining Amylin, Dan worked in marketing and sales roles for ten years at SmithKline Beecham Pharmaceuticals. He serves on the board of directors of Biocon Limited (NSE: BIOCON), Corcept Therapeutics (NASDAQ: CORT), Geron Corporation (NASDAQ: GERN), Illumina, Inc. (NASDAQ: ILMN), Syngene International Limited (NSE: SYNGENE), Castle Biosciences, Inc. (Private), DiaVacs, Inc. (Private), Freedom Meditech, Inc. (Private), Liquid Grids, Inc. (Private), Microdermis, Inc. (Private), Profil Institute for Clinical Research, Inc. (Private), Renova Therapeutics (Private), Sensulin, Inc. (Private) and Troia Therapeutics, Inc. (Private). He also serves on the board of the Riecken Community Libraries, the board of trustees of the Keck Graduate Institute, the Investor Growth Capital Advisory Board, the BioMed Ventures Advisory Committee and the University of California San Diego’s Rady School of Management's Advisory Council. Dan received a Bachelor of Pharmacy from Nottingham University and a Diploma in Management Studies from Harrow and Ealing Colleges of Higher Education in the United Kingdom. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738271602-APT3QGACVBNHVR79LM2Z/nicholas.png About Us - ADCY5-related movement disorder - Nicholas Schork, Ph.D. Head of Scientific Advisory Board Dr. Schork is Professor and Director, Human Biology, at the J. Craig Venter Institute (JCVI), Professor at the Translational Genomics Research Institute (TGen) in Phoenix and an Adjunct Professor at the University of California, San Diego. Prior to his position at the JCVI, Dr. Schork was a Professor, Molecular and Experimental Medicine, at The Scripps Research Institute (TSRI) and Director of Bioinformatics and Biostatistics for the Scripps Translational Science Institute (STSI). Dr. Schork has also held faculty appointments at Case Western Reserve University (CWRU) and Harvard University. Between 1999 and 2000 Dr. Schork took a leave of absence from CWRU to conduct research as the Vice President of Statistical Genomics at the French Biotechnology company, Genset, where he helped guide efforts to construct the first high-density map of the human genome. He has published over 500 articles in the area of the genetic dissection of complex phenotypes. These articles include both methodological and applied studies. He also has a long history of collaborative and consortium-related research in which he has contributed analysis methodology and applied data analysis expertise. Dr. Schork has a number of patents associated with genetic analysis methodology, been involved with more than 10 start-up companies, and has mentored over 75 students and post-doctoral fellows. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/29c35c1b-b7c4-4902-9c5f-fa0a1114803d/Ann+Bang+image.jpeg About Us - ADCY5-related movement disorder - Ann Bang, Ph.D. Ann is Assoc. Professor and Director at Sanford Burnham Prebys Medical Discovery Institute. She leads a research program at the interface of human stem cell biology and drug discovery, focused on translating disease-relevant biology into therapeutic hypotheses. As an Associate Professor at the Sanford Burnham Prebys Medical Discovery Institute and Director of Cell Biology at the Conrad Prebys Center for Chemical Genomics, my laboratory develops induced pluripotent stem cell (iPSC) models of human disease and pairs them with quantitative, scalable phenotyping, with the long-term goal of identifying actionable targets. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/5b7ca903-63cb-433b-a19e-889d012f8904/Darius+image.jpeg About Us - ADCY5-related movement disorder - Darius Ebrahimi-Fakhari, M.D., Ph.D. Director, Movement Disorders Program, Boston Children's Hospital; Attending Neurologist; Neuroscientist at the Kirby Neurobiology Center Dr. Ebrahimi-Fakhari is a pediatric neurologist and neuroscientist at Boston Children’s Hospital and Harvard Medical School, where he leads the Movement Disorders Program. His clinical and research work focuses on children and families affected by rare genetic movement and neurodegenerative disorders. Dr. Ebrahimi-Fakhari has a particular interest in understanding the biology of rare genetic diseases and translating that knowledge into meaningful treatments for patients. His work includes ADCY5-related disorder, GNAO1-related disorder, and other rare childhood movement disorders, with research spanning disease mechanisms, natural history, and therapeutic development. He has been closely involved in advancing the understanding of ADCY5-related disorder, including research examining treatment approaches for children living with the condition. His work reflects a commitment to bringing together clinical care, scientific discovery, and the experiences of rare-disease families. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/d5462758-9f0b-4a00-bf22-a4065c62a19b/Kruer+image.jpeg About Us - ADCY5-related movement disorder - Michael Kruer, M.D. Dr. Kruer is a pediatric neurologist and physician-scientist specializing in genetic and movement disorders. He is Director of the Pediatric Movement Disorders Program at Barrow Neurological Institute at Phoenix Children’s and an Associate Research Professor at the University of Arizona College of Medicine – Phoenix. His research focuses on understanding how genetic changes cause childhood movement and neurodevelopmental disorders, with the goal of improving diagnosis and treatment. His work has contributed to the scientific understanding of rare genetic movement disorders, including disorders involving ADCY5, and spans human genetics, disease mechanisms, and translational research. A longtime advocate for families searching for answers to rare neurological conditions, Dr. Kruer combines clinical care with laboratory research aimed at turning genetic discoveries into better treatments for children and their families. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738244487-X6KWRGXVXX2X8QIHOYVP/emmanuel.png About Us - ADCY5-related movement disorder - Emmanuel Flamand-Roze, M.D., Ph.D. Dr. Roze is a professor of Neurology at Sorbonne University in Paris. He is consultant neurologist at the movement disorders clinic with a special expertise in children movement disorders, and as scientific researcher at Paris Brain institute, within the Salpêtrière Hospital (Paris). His main research interests are neurodevelopmental disorders of the motor system and particularly dystonia and mirror movements. He studies clinical aspects, genetic causes and neurophysiological mechanisms and also works on experimental therapeutics in preclinical models and patients with movement disorders. He published about 250 papers, mostly on these topics. As a teacher at the university, he has implemented an innovative simulation-based medical education program using role-play to teach neurology. In the past, he received the award of the French neurological society and the Breughel price for his works on dystonia and the “pilot project” award of the dystonia coalition (supported by the NIH/USA) for a project studying the role of the cerebellum in focal dystonia. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1617060072949-08NB58JXNK2LGRQ2LBOL/MarlaTobia.png About Us - ADCY5-related movement disorder - Marla Tobia Marla is the parent of a teenage daughter, Laura with ADCY5-related dyskinesia. Marla graduated from Eastern Kentucky University with a BSN in 1998 and worked as an RN for the University of Kentucky in the Neonatal Intensive Care Unit. She obtained a Masters of Science in Nursing from the University of Louisville in 2003 and now works as a Neonatal Nurse Practitioner at Winnie Palmer Hospital for Women and Babies, one of the largest Neonatal Intensive Care Units in the world. Marla formerly worked as a NNP for the University of Kentucky, St. Vincent Women’s Hospital and Johns Hopkins All Children’s Hospital. She currently sits on multiple hospital committees and her special interests include neonatal intestinal surgical patients, congenital diaphragmatic hernias and pulmonary hypertension in infants. Since Laura was diagnosed in 2013, Marla and her family have been dedicated to finding the best treatment options available for Laura. Marla, her husband son, and Laura live in Florida. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/22805570-b11c-4290-ba77-480e4c918659/Chang+image.jpeg About Us - ADCY5-related movement disorder - Timothy S. Chang, M.D., Ph.D. Associate Professor at David Geffen School of Medicine at UCLA Dr. Chang is a neurologist and physician-scientist at UCLA specializing in movement disorders and genetic neurological disease. He is an Associate Professor of Neurology at the David Geffen School of Medicine at UCLA and is part of the UCLA Movement Disorders Program. Dr. Chang’s research combines clinical neurology, genetics, genomics, and biomedical informatics to better understand how genetic and biological factors contribute to neurological disease. His clinical expertise includes genetic movement disorders and dystonia, as well as neurodegenerative disorders. Dr. Chang has contributed to the scientific understanding of ADCY5-related disorder, including research examining the clinical and genetic features of individuals with ADCY5 variants. His work reflects the importance of combining genetic discovery with careful clinical characterization to better understand rare neurological diseases and ultimately advance precision approaches to care. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/e915333d-b952-436e-8e6e-65b30951bc54/Hart+image.jpeg About Us - ADCY5-related movement disorder - Chris Hart, Ph.D. Chris is a biotech and computational biology leader with more than two decades of experience at the intersection of genomics, machine learning, and therapeutic development. He co-founded Creyon Bio, a San Diego biotechnology company focused on engineering RNA-based medicines, after building and leading the Functional Genomics group at Ionis Pharmaceuticals. At Ionis, he oversaw genomics and bioinformatics efforts and translational ‘omics and drug-discovery programs spanning rare and common diseases. Dr. Hart earned his Ph.D. in Biology and Computer Science Applications in Biotechnology from the California Institute of Technology and completed postdoctoral training at Yale University. His career also includes academic research and work advising the White House Office of Science and Technology Policy on personalized medicine and international health research. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/73350b67-35fb-4fc9-8dd3-8cf760e58a26/Uma+image.png About Us - ADCY5-related movement disorder - Uma Lakshmipathy Chief Scientific Officer & Co-Founder Uma is Chief Scientific Officer & Co-Founder at neucellbio. Prior to this, she was Director of R&D in Science and Technology and Head of Patheon Translation Services supporting Advanced Therapies in Pharma Services Group at Thermo Fisher Scientific. Her work has focused on tools and technologies for stem cells and characterization platforms for cell therapies. Her work has resulted in the development of novel cell engineering platform to modify stem cells, robust reprogramming systems to generate induced pluripotent stem cells and comprehensive characterization tools for cell therapy applications. She has authored several scientific publications, books, patents and currently serves as member of many Committees and Advisory Boards. Uma has a doctoral degree in Molecular Biophysics from the Center for Cellular and Molecular Biology in India and postdoctoral experience in DNA double strand break repair from University of Minnesota Medical School. As a junior faculty at the Stem Cell Institute, University of Minnesota, her work involved developing ex vivo gene repair systems that enable correction of single gene mutations in adult stem cells. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/7ba4d23c-6ef9-4e4a-9d4f-d08f2aae5f4a/emma.webp About Us - ADCY5-related movement disorder - Emma Maly Emma is the proud mother of a beautiful 5 year old girl, Grace with ADCY5-related movement disorder. She has a Bachelor of Nursing graduating from the University of Technology Sydney in 1998. Emma has worked in Acute Cardiology and Oncology at both Royal North Shore Hospital, Sydney Australia and the Mater Hospital Sydney Australia. Following this, she worked in the Pharmaceutical Industry for the following companies Lundbeck Australia, as a Field Education Specialist in the area of psychiatry medications and Mayne Pharmaceuticals as a Specialist Sales Representative in their Oncology team. Also at Amgen Australia, a Biotechnology company in the following roles as a Specialist Representative in Oncology, Field Education-Training Specialist and Product Specialist. She has also worked casually in retail in between having three children. Her most recent role is a fulltime carer for Grace, helping her to reach her fullest potential whilst she navigates through life living with ADCY5-related movement disorder, as well as caring for her two older brothers . She is very excited to be part of the Scientific Advisory Board for the foundation, ADCY5.org and the work they are doing to make a difference in and improve the lives of those living with ADCY5-movement disorder. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/fbfb76e1-1456-432c-9aeb-1fe5505edd46/Tamara+image.jpeg About Us - ADCY5-related movement disorder - Tamara Pringsheim, MD, FRCPC Tamara is a Professor in the Departments of Clinical Neurosciences, Psychiatry, Pediatrics, and Community Health Sciences at the University of Calgary and a neurologist specializing in movement disorders, neuropsychiatry, and neurodevelopmental disorders. She is the Program Lead of the Tourette Syndrome and Pediatric Movement Disorders Program at Alberta Children’s Hospital and Deputy Director of the Mathison Centre for Mental Health Research and Education. Dr. Pringsheim’s clinical and research work focuses on improving care for children and adults with movement disorders and neurodevelopmental conditions, with particular expertise in Tourette syndrome, tics, dystonia, tremor, and evidence-based treatment. Her research emphasizes rational pharmacotherapy, clinical practice guidelines, care pathways, and other approaches that translate research into better patient and family care. She also serves as an evidence-based medicine methodologist for the American Academy of Neurology and is President of the Tourette OCD Alberta Network. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/9c1ff445-6ae4-42cd-8e6e-f0b302321393/Sinz+image.jpeg About Us - ADCY5-related movement disorder - Andrea Sinz, Ph.D. Andrea is a Professor of Pharmaceutical Chemistry and Bioanalytics at Martin Luther University Halle-Wittenberg in Germany and Head of the university’s Center for Structural Mass Spectrometry. Her research focuses on understanding protein structure and protein–protein interactions using advanced mass spectrometry and biochemical approaches. Dr. Sinz has made important contributions to research on ADCY5-related dyskinesia, collaborating with researchers at the University of Leipzig to investigate how ADCY5 mutations affect cellular signaling and how existing medications might be repurposed as potential treatments. Her work contributed to studies demonstrating the effects of theophylline and related compounds on ADCY5 activity and, more recently, to a clinical case series evaluating theophylline in people with ADCY5-related dyskinesia. Dr. Sinz received her pharmacy degree from the University of Tübingen and her PhD in Pharmaceutical Chemistry from th https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1617060072949-08NB58JXNK2LGRQ2LBOL/MarlaTobia.png About Us - ADCY5-related movement disorder - Marla Tobia Marla is the parent of a teenage daughter, Laura with ADCY5-related dyskinesia. Marla graduated from Eastern Kentucky University with a BSN in 1998 and worked as an RN for the University of Kentucky in the Neonatal Intensive Care Unit. She obtained a Masters of Science in Nursing from the University of Louisville in 2003 and now works as a Neonatal Nurse Practitioner at Winnie Palmer Hospital for Women and Babies, one of the largest Neonatal Intensive Care Units in the world. Marla formerly worked as a NNP for the University of Kentucky, St. Vincent Women’s Hospital and Johns Hopkins All Children’s Hospital. She currently sits on multiple hospital committees and her special interests include neonatal intestinal surgical patients, congenital diaphragmatic hernias and pulmonary hypertension in infants. Since Laura was diagnosed in 2013, Marla and her family have been dedicated to finding the best treatment options available for Laura. Marla, her husband son, and Laura live in Florida. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738627057-C74EIDZYAMCJL3O4JCUH/rarescience.jpg About Us - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613738641128-V29KSSGMH2I7UGM6WXFO/cirm.jpg About Us - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766549613-XSCJ4HBY2PI4YJCCBLO6/donate_offwhite.png About Us - ADCY5-related movement disorder https://www.adcy5.org/resources daily 0.75 2025-09-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736951807-3WHAGE67PA92ZF6IYZSH/WeAreAllRare.png Resources - ADCY5-related movement disorder - We Are All Rare The perfect tool for children and adults to start the discussion about Rare Disease. Written by a Rare Disease patient and her mom, you can use the puzzles, word search, and even the wheat/corn/soy/dairy free cookie recipe, to learn about how some students accommodate in school. Teachers can use them in classrooms, students can take them home to share with parents and siblings, and students can share with friends. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/ac4c0e52-9239-458c-bde6-c8ffd2cf7f64/zoom.png Resources - ADCY5-related movement disorder - Family calls on Zoom Dates that have two times will follow the same agenda so there is no need to join both. Please join the best time for you. Dates are in the footer at the bottom of the page. Times are in Los Angeles/ Pacific Time zone. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614634221964-MK5O9GI1DCT3JJNAC7JJ/slack.png Resources - ADCY5-related movement disorder - Slack Channel Connect with other families on our private Slack Channel. Contact us to request access. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615296597206-6L4JPDQWVMWA3FR1ZL12/FindUsOnFacebook2.png Resources - ADCY5-related movement disorder - Facebook Community Join our Facebook community to connect with other ADCY5-related dyskinesia families. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616513065814-JAFV5Y90D10XFE0SICJP/instagram2.png Resources - ADCY5-related movement disorder - Instagram Follow us on Instagram to learn more about our community. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616162118839-CL8W27E62RC4WT4A90SN/01_ADA.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616162915224-QNUNAXIKGN83NUZ9X2AH/04_GG.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163289056-L4CFFZ188GXTV7GURDKQ/07_cdss.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163563957-7C1CI5HJAH7CM31H012P/10_Epilepsy.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165093294-9XSIZJ7MZV8QV9KA3MJV/13_NORD.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165663361-7ZBUXIJ3IWFYZIK6DIZR/16_NCATs.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165692175-USB2VZVG8ZGI4XK9LPCK/19_WritesLaw.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/81211f42-1468-4bf7-b215-861331c03ca5/Logo+Combined+Brain Resources - ADCY5-related movement disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616162133677-SI14DK3JZZ9X2L0MHO1D/02_DHCS.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163298686-ZTB55AWIO8R8P94HFMA4/08_Sanford.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163573776-IHOQUNOCSULUNF59XDTU/11_UMDF.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165103618-3UY2SI1KXD81SOZIP1BK/14_RDCRN.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165672499-30Z0MMKJS4ZSEOF8B2OO/17_Dystonia.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165702523-CUS95E1DUURNWHN7QNRX/20_CNF.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616334594892-OCY6NQG8MZBMKRR6SECV/21_TheMighty.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/5ed561e4-49c9-4c6f-83cd-3eea721f0c82/Logo+CIRM Resources - ADCY5-related movement disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616162160562-DPA0Q13XTBWWIPEGHPNT/03_geneticalliance.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616162932590-EBYZDMKLEQQYTO8QUW72/06_IDEA.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163308418-D1C5GW3HLORREQ1BG2UX/09_CP.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616163585316-7G1ND34MNR515CO327A8/12_RGI.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165114898-V06VACYFVSE2NJ43V3M5/15_RUN.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616165682221-H89XLRZFJZQ58SYQYMSB/18_Unique.png Resources - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/941d3faf-6cae-4a5b-9f96-90eeb32322bf/Logo+My+Gene+2 Resources - ADCY5-related movement disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/fc5ded52-82cf-437b-a3c1-4d6418836e31/cprf+logo.png Resources - ADCY5-related movement disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766525533-9D90XPYGBPFQZE83KPN9/registry_offwhite.png Resources - ADCY5-related movement disorder https://www.adcy5.org/grace daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/611aeda5-da08-4fb0-8439-fad0cd6266bb/Grace2.jpg Grace - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258939022-MPD0FG8DOOM55IV0HBFB/djaro.png Grace - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734495183-IGJF0WD8FNGQQDB4JUY6/lilly.png Grace - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258919635-9KI0M42SKY1TKR2HMC3M/adryan.png Grace - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766581235-ZANFS9QFQ3LCGRLAB2GU/registry_offwhite.png Grace - ADCY5-related movement disorder https://www.adcy5.org/ginevra daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614290709064-NXHDWTPHD6PLZKM0UW94/unnamed.jpg Ginevra - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734481367-QJJ89KH3OHHNCUOUDRQJ/maya.png Ginevra - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614293024141-JT7GAHMFUSDL01CDOK9J/laura.png Ginevra - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614293038722-OXS6ASZGL8IE61RBRJVB/francesca.png Ginevra - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766581235-ZANFS9QFQ3LCGRLAB2GU/registry_offwhite.png Ginevra - ADCY5-related movement disorder https://www.adcy5.org/kendall daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614050245105-RJW69AS3SDO9PIXLGUB4/kendall1.jpeg Kendall - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292770248-TXQAL42ZZ38WM5KNRYW1/grace.png Kendall - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292754508-5S4QOY7XX8R67FXLPJHF/laura.png Kendall - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292646090-A9H9RMM7NRA63KP7I2CM/ginevra.png Kendall - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766581235-ZANFS9QFQ3LCGRLAB2GU/registry_offwhite.png Kendall - ADCY5-related movement disorder https://www.adcy5.org/laura daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614050048481-PN7Z449HZ3RNMV9EG65K/Laura.jpg Laura - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292948900-IICRYNAS65SLGJG6G45E/kendall.png Laura - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292964498-DIFXLZYM0847ZQZ96OA7/ginevra.png Laura - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292838025-0KX00C8V6HX6RCGV9XYU/francesca.png Laura - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766581235-ZANFS9QFQ3LCGRLAB2GU/registry_offwhite.png Laura - ADCY5-related movement disorder https://www.adcy5.org/olive daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/364eae8f-8fe4-453c-a1aa-0c882252d12b/Olive05.jpg Olive - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1681ff2d-e147-4a87-8338-4f0dd5e194b7/Olive07.jpg Olive - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/68e081d1-980e-41d8-b7d4-51014cfabf01/Olive04.jpg Olive - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/584b2d9d-976f-4637-b2c6-78cebf562b1e/Olive08.jpg Olive - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/676e3efb-18b0-4ed5-9e40-5481f30d72a6/Olive02.jpg Olive - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/bb45a50a-2701-48bd-bbff-e1caa6ff88fb/Olive01.jpg Olive - 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ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/34806e47-98c0-4586-9ef7-ba40463b628f/Foto+20.01.21%2C+22+11+42.jpg Anna - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/e91c8b4e-0c25-47b3-907a-21cfb0a5901f/Foto+20.01.21%2C+20+55+17.jpg Anna - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/9b74d68e-6c1f-4787-9e75-ba2c58ac10c7/Foto+20.01.21%2C+20+52+40.jpg Anna - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/08efca62-766a-4930-b0fd-b94db1f2d4d3/Foto+20.01.21%2C+20+46+07.jpg Anna - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/bd13d15d-cd1c-4195-9e13-21557a5bab4d/Foto+20.01.21%2C+20+39+18.jpg Anna - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/47db097d-8ee5-4569-8a86-bad56073ca54/Foto+20.01.21%2C+20+47+51.jpg Anna - 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ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/03fcb2da-b3aa-43c7-a7aa-111bd054ef02/Enzo03.jpg Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/01e1d8e6-7836-4daa-a817-f4d98e2c6fb5/Enzo02.jpg Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/c9f30f84-931f-45bf-b898-c0f2b0bf1456/Enzo01.jpg Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261586288-NPS5ZE0LF7KNUR4XYUCI/ginevra.png Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261598325-CUHJCEVR0MY7O9OT065V/anna.png Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261629355-0JP03N7Z5TVMLM6VAIJX/hugo.png Enzo - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766670603-5CFMM91MKVV8S9MMNSYZ/registry_offwhite.png Enzo - ADCY5-related movement disorder https://www.adcy5.org/adryan daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/9a615f08-3615-4835-9d64-1b7e7268732d/unnamed-2.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/bb2669d6-3105-4736-a2d2-3cb240882f7a/unnamed-5.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/24eaedbf-9a9f-4963-b1d6-66ad639f9c00/unnamed-6.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/cc1f70be-d897-4fa3-a40b-533c7fbad503/unnamed-3.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1f3793e4-638b-462f-beb8-87a7a38cb901/unnamed-4.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/6d2e2588-3656-4538-82f0-a8272680f3ef/unnamed-7.jpg Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261789017-T87GD3JC0SMV9L815JRI/enzo.png Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261803267-ANQHHHWK83992UYDK8CF/hugo.png Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261823913-1NL8IB1K2YWYTLDNN0BZ/francesca.png Adryan - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766670603-5CFMM91MKVV8S9MMNSYZ/registry_offwhite.png Adryan - ADCY5-related movement disorder https://www.adcy5.org/djaro daily 0.75 2023-10-16 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/93fb95de-ebb6-43b8-bbfa-f06109f0109f/Djaro.jpg Djaro - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261789017-T87GD3JC0SMV9L815JRI/enzo.png Djaro - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261803267-ANQHHHWK83992UYDK8CF/hugo.png Djaro - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1615261823913-1NL8IB1K2YWYTLDNN0BZ/francesca.png Djaro - ADCY5-related movement disorder https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766670603-5CFMM91MKVV8S9MMNSYZ/registry_offwhite.png Djaro - ADCY5-related movement disorder https://www.adcy5.org/research daily 0.75 2025-10-02 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736069295-J3V88SBB5FGZC65TTXBI/mousecolony.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736086260-AFRBMR2A29REKUC1KAIM/StemCells.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736109824-NUTH5M32BNFC97A3D760/screening.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736207542-ZUYW11BXT0N7ETP8ZW6I/expert.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613736228817-RSW242LC2QZBTKHJTNPL/naturalhistory.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613740577852-MRZNLSM0T43MCJYUXEXV/caffeine3.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768000557-2U4PWQ4GQMETR9MQ33IM/stem+cells_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768020069-BBWCCUUQN8FGWCYR0JCY/13+patients_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768039474-M7F3LLE0PBHRKE13MDUA/30+siblings_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768064055-7O0TZI43V2R8B7UZDX2V/coriell_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768145983-R052TX0PIS4KQAYBT4MW/microbiome+data_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768077159-QTZI4L20Z34JQXR3BZMX/no+ip+reachback_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613768115722-2120NN3YYE6JPUU2M3FU/recruiting+scientists_ltblue.png https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766495588-HYYPMIXX2DHIGDEXTHOH/testing_offwhite.png Research - ADCY5-related movement disorder https://www.adcy5.org/get-involved daily 0.75 2026-01-30 https://www.adcy5.org/community-feb23 daily 0.75 2023-09-03 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291235187-H1MQNJ88ND7DBXXGW0W9/anna.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616160915001-3VQNQ1T9FIIZ46EMOF3O/enzo.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291337251-391Q0NUUFAMPIXCZ75VA/laura.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/e53483f2-af89-481b-bee2-9860f7622c36/Grace.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258657504-XHO150ZHVOP4ED329ZO7/adryan.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291456041-7Q7MQM6GDX4CKQDH0WVJ/kendall.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291847806-DI8ZD5Z9P4Q1GGR5O0O7/maya.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291411976-JKXRXGF0P2WQ0K4NMG62/lilly.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291909080-WZ2OXHG8384LM3ON4RDN/olive.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291761011-HZTBGH7W1JJQJX28S1YT/francesca.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616160938369-060RTQQEALHXWB0CDLO0/hugo.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616291739753-CRZJADBNCHOD0BPBA5QS/ginevra.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258684649-1HKSQQDFZVLVWN0JXYDU/djaro.png Community - feb 2023 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734631124-627XREHXC4VJQHOW3Z7C/lillynews.png Community - feb 2023 - Lilly Global Genes - Coming Home Due to COVID-19 RespectAbility - The Value of Being Unbiased RespectAbility - Eye of the Lioness The Quaker Campus - Letter to the Editor Medium - Great Expectations: How Patient Advocacy Gave Me Hope National Geographic - “We Gain Hope” The Story of Lilly Grossman’s Genome The Atlantic - How Genome Sequencing Creates Communities Around Rare Disorders LA Times - Family hopes genome test will help cure girl’s mystery disease LA Times - Gene mutation didn’t slow down high school senior https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613734678916-72NTZ6M9JAM23GV38N6M/grace.png Community - feb 2023 - Grace YouTube - Grace and Fran Interview with Weekend Sunrise7 News Sydney - Caffeine helping to treat young patients in Sydney with neurological disorders 7 News Sydney (Instagram) - The Children's Hospital at Westmead has stumbled upon a remarkable treatment for a group of young patients with a rare neurological disorder. https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766466759-LA4ECWAQGCXYW962DD36/registry_offwhite.png Community - feb 2023 https://www.adcy5.org/adcy5-clinicians daily 0.75 2025-10-07 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/7a6da38f-e57e-49b3-8e5f-ec22a979093d/Armenian+flag Clinicians - ADCY5-related movement disorder - Armenia Dr. ZD Tavadyan Neuropathologist Neurologist, Head of the Center for Parkinson’s disease and other Movement Disorders, “Somnus” Neurology Clinic Contact information: https://www.doctors.am/en/doctor/zaruhi-tavadyan https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/b77d4be6-9b48-4900-bb8c-9e45fa59862b/Australia+flag.png Clinicians - ADCY5-related movement disorder - Australia Dr Eunice Chan, MD Paediatric Neurologist Royal Children’s Hospital Melbourne Movement disorder clinic Contact information: movementdisorders@rch.org.au Dr. Victor Fung, MD Adult Neurologist The Specialist Medical Centre Westmead New South Wales Contact information: https://www.healthshare.com.au/profile/professional/142244-aprof-victor-fung/#overview Dr. Shekeeb Mohammad, MD Paediatric Neurologist Westmead Children’s Hospital New South Wales Contact information: shekeeb.mohammad@health.nsw.gov.au https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/2ac4a8a6-89a4-4dc2-a612-70a7a3c106e5/Brazil_flag_300.png Clinicians - ADCY5-related movement disorder - Brazil Dr. Andre Pessoa, MD Hospital Ifantil Albert Sabin Fortaleza, Brazil Contact information: https://neurogenetics.com.br/team-member/dr-andre-pessoa/ Dra. Patricia Dumke da Silva Möller, MD Versi Clínica, Centro Clínico Biocenter Brasília, Brazil Contact information: https://www.patriciamoller.com.br/ Dr. Patricia da Silva Sousa, MD Children's Hospital Doctor Odorico Amaral de Matos São Luis, Brazil Contact information: https://www.escavador.com/sobre/1463668/patricia-da-silva-sousa-carvalho https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/a202b696-a75a-4ad1-8875-c5446f3ca54c/Cananda+flag.png Clinicians - ADCY5-related movement disorder - Canada Dr. Inge Meijer, MD Hospital Sainte-Justine Montréal, QC, Canada Contact information: https://dystoniacanada.org/inge-meijer-m-d-ph-d-frcp-c Dr. Tamara Pringsheim, MD University of Calgary Calgary, Canada Contact information: https://contacts.ucalgary.ca/info/chs/profiles/1-4838725 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/56250a92-9b77-4e7a-8b9d-2b2d3e8196b1/Flag_of_France.png Clinicians - ADCY5-related movement disorder - France Dr. Emmanuel Flamond-Roze, MD Paris Brain Institute Paris, France Contact information: https://www.movit.paris/team-pi/emmanuel-flamand-roze https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/ef75f42b-45b1-4fe1-a2cb-01ce777a7d5c/german-flag-medium.png Clinicians - ADCY5-related movement disorder - Germany Prof. Dr. Andreas Merkenschlager, MD University of Leipzig Leipzig, Saxony, Germany Contact information: https://www.uniklinikum-leipzig.de/einrichtungen/kinderklinik/Seiten/neuropaediatrie.aspx https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/3e700873-f536-4c22-a1be-62804ad03511/Flag-of-The-Netherlands3.png Clinicians - ADCY5-related movement disorder - Netherlands Dr. Rick Brandsma, MD University Medical Center Utrecht Utrecht, Netherlands Contact information: https://www.umcutrecht.nl/nl/zorgverleners/brandsma-r-rick Dr. Jolanda Schieving, MD Radboud University Medical Center Nijmegen, Netherlands Contact information: https://www.radboudumc.nl/en/news/2021/a-personal-glimpse-of-jolanda-schieving Dr. Laura van de Pol, MD Academic Medical Center Amsterdam, Netherlands Contact information: https://www.vumc.nl/zorg/uw-artsen-en-zorgverleners/zorgverlener/l.m.-laura-van-de-pol.htm https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/dfc5a605-b567-4abf-9072-5b460d0489d0/Peruvian+flag Clinicians - ADCY5-related movement disorder - Peru Dr. Mario Cornejo Olivas Research Professor Universidad Científica del Sur Contact information: https://cris.cientifica.edu.pe/p/en/persons/mario-cornejo-olivas https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/48ce15f8-2cdf-49f8-adc7-23a7470c90d1/Philippines+flag Clinicians - ADCY5-related movement disorder - Philippines Dr. Gerard Saranza Department of Internal Medicine St. Vincent General Hospital Contact information: https://www.svgh.ph/doctor_profile?doc_name=Dr.+Gerard+Saranza https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/d34c6fc4-d7ed-45d6-b1c3-b0391c9df3de/poland+flag.jpg Clinicians - ADCY5-related movement disorder - Poland Dr. Lukasz Milanowski, MD Medical University of Warsaw Contact information: https://www.researchgate.net/profile/Lukasz-Milanowski https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/885957f0-64f7-447e-91e4-184c3ace3d43/united-kingdom.png Clinicians - ADCY5-related movement disorder - United Kingdom Dr. Dan Lumsden, UK, MD Kings College London London, England Contact information: https://kclpure.kcl.ac.uk/portal/en/persons/dan-lumsden(f84ae62b-b8af-4b9a-864b-ca8109c19031).html https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/ba6ac402-c2c0-45e1-be24-4e08bd972308/American+Flag.jpg Clinicians - ADCY5-related movement disorder - United States of America Dr. Galen Breningstal, MD Gilette Children’s St. Paul, Minnesota Contact information: https://www.gillettechildrens.org/care-team/galen-breningstall-md-pediatric-neurologist Dr. Tim Feyma, MD Gillettes Children’s Hospital and Clinics St. Paul, Minnesota Contact information: https://www.gillettechildrens.org/care-team/timothy-feyma-md-pediatric-neurologist Dr. Jennifer Friedman, MD Rady Children’s Hospital/ UC San Diego San Diego, California Contact information: https://www.rchsd.org/doctors/jennifer-friedman-md/ Dr. Nutan Sharma, MD, PhD Mass General Brigham Dystonia Clinic at Massachusetts General Hospital Boston, Massachusetts Contact information: https://www.massgeneral.org/doctors/17303/nutan-sharma Dr. Naomi Lubarr, MD Paediatric Neurologist Mount Sinai Beth Israel & Hakensack University Medical Center Contact information: https://www.linkedin.com/in/naomi-lubarr-7649a09b/ Dr. Michael Okun, MD University of Florida Gainesville, FL Contact information: https://neurology.ufl.edu/profile/okun-michael/ Dr. Laura Tochen, MD Children’s National Hospital Washington DC Contact information: https://childrensnational.org/visit/find-a-provider/laura-tochen Dr. Kara Wyant, MD University of Michigan Ann Arbor, Michigan Contact information: https://medicine.umich.edu/dept/neurology/kara-j-wyant-md Dr. Kathryn Yang, MD Boston Children's Hospital Boston Contact information: https://www.childrenshospital.org/directory/kathryn-yang https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766525533-9D90XPYGBPFQZE83KPN9/registry_offwhite.png Clinicians - ADCY5-related movement disorder https://www.adcy5.org/adcy5-clinicians-patient-form daily 0.75 2024-05-06 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766525533-9D90XPYGBPFQZE83KPN9/registry_offwhite.png Patient Clinician Form https://www.adcy5.org/new-page daily 0.75 2024-05-06 https://www.adcy5.org/adcy5-patient-stories-form daily 0.75 2024-08-05 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766525533-9D90XPYGBPFQZE83KPN9/registry_offwhite.png Patient Stories Form https://www.adcy5.org/meredith daily 0.75 2026-03-22 https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258827630-JMMOFKJGFYMY2TE448KQ/adryan.png Meredith https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1616258813731-SKLRVPR22VNPWXT7F3L7/djaro.png Meredith https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1614292223056-SWV4Q35QXW3O45ZFV8LD/grace.png Meredith https://images.squarespace-cdn.com/content/v1/5fe2b7fbabda87280e0dcb94/1613766645188-1RTUWK0CO4W2EKV9BJ1U/registry_offwhite.png Meredith