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DTSTART;VALUE=DATE:20211101
DTEND;VALUE=DATE:20220102
DTSTAMP:20260510T163004
CREATED:20210917T160416Z
LAST-MODIFIED:20211029T202227Z
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SUMMARY:2021 Holiday Heroes
DESCRIPTION:[vc_row][vc_column][vc_column_text] \nLearn more about Holiday Heroes 2021 and make a donation today!\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_btn title=”Visit the Holiday Heroes 2021 Site” size=”lg” align=”center” link=”url:https%3A%2F%2Fcreatineinfo.org%2Fholiday-heroes%2F”][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/2021-holiday-heroes/
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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20211022T130000
DTEND;TZID=America/Denver:20211022T140000
DTSTAMP:20260510T163004
CREATED:20211007T201128Z
LAST-MODIFIED:20220917T204957Z
UID:19800-1634907600-1634911200@creatineinfo.org
SUMMARY:FDA Webinar: The Clinical Trials Process
DESCRIPTION:Register today! The FDA is presenting an important webinar to the CCDS community Friday\, October 22nd\, from 3:00-4:00 EST. Dr. Sheila Farrell\, MD\, MPH from the FDA’s Center for Drug Evaluation and Research will discuss the clinical trials process. \nView the recording here.
URL:https://creatineinfo.org/event/fda-webinar-the-clinical-trials-process-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210910
DTEND;VALUE=DATE:20210912
DTSTAMP:20260510T163004
CREATED:20210413T124055Z
LAST-MODIFIED:20210908T162912Z
UID:18734-1631232000-1631404799@creatineinfo.org
SUMMARY:2021 CCDS Virtual Conference
DESCRIPTION:[vc_row][vc_column][vc_column_text]The 2021 CCDS Virtual Conference will be held virtually on September 10th and 11th\, 2021. The meeting will cover two days of scientific talks by international researchers and physicians from around the world. The meeting is hosted by the Association for Creatine Deficiencies (ACD). \nThe mission of the ACD is to advocate\, educate\, and promote research for patients and families coping with the effects of a creatine deficiency. Given our mission\, we believe it is imperative to hold open and collaborative scientific meetings and to unite knowledge of creatine deficiencies across the globe. \nEvent Details/Registration\n[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/2021-ccds-virtual-conference-event/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210821
DTEND;VALUE=DATE:20210822
DTSTAMP:20260510T163004
CREATED:20210413T123918Z
LAST-MODIFIED:20220518T164428Z
UID:18732-1629504000-1629590399@creatineinfo.org
SUMMARY:Walk for Strength 2021
DESCRIPTION:Join us on Saturday\, August 21st\, 2021 for the ACD’s sixth annual Walk for Strength!\nClick here to register!
URL:https://creatineinfo.org/event/wfs-2021/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200807
DTEND;VALUE=DATE:20200809
DTSTAMP:20260510T163004
CREATED:20200421T070437Z
LAST-MODIFIED:20221205T164350Z
UID:16630-1596758400-1596931199@creatineinfo.org
SUMMARY:Virtual Conference 2020
DESCRIPTION:[vc_row][vc_column][vc_column_text]The Association for Creatine Deficiencies hosted the 2020 Cerebral Creatine Deficiency Syndromes (CCDS) Virtual Conference on August 7th and 8th\, as well as a keynote talk on August 2nd. The goal of this meeting was to share the latest CCDS research and to broaden our research network. Talks covered a variety of topics such as natural history data\, computational analysis of mutations\, structural insights\, as well as new directions for treatments\, including gene therapy.[/vc_column_text][vc_separator border_width=”4″][/vc_column][/vc_row][vc_row][vc_column][vc_column_text] \nSpeakers\nRecordings are linked below the speaker’s name.\nNot all talks were recorded.\n*Due to technical difficulties\, some recordings are incomplete.\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_column_text]Laura Trutoiu\, Ph.D.\nACD\, Director of Research \nConference Talk Recording \nIt is our great pleasure to welcome you to the CCDS 2020 Virtual Conference. As a parent-led organization\, our responsibility is to support the widest range possible of relevant research efforts in the scientific community\, including biotech\, and industry\, in order to maximize our chances of getting treatments. This virtual meeting is featuring 20 speakers covering the latest research on cerebral creatine deficiencies. As part of this welcome talk\, we will share some of the ACD initiatives and success stories from the past year. Thank you for being part of our community![/vc_column_text][/vc_column][vc_column width=”1/2″][vc_column_text]Sangeetha Iyer\, Ph.D.\nACD\, Scientific Advisor \nConference Talk Recording \nDr. Sangeetha Iyer received her PhD in Molecular Pharmacology from the University of Pittsburgh and went on to complete her postdoctoral research at the University of Texas at Austin. She has over ten years of experience in model/assay development and drug screening for human disorders. Dr. Iyer is currently employed at Denali Therapeutics Inc\, where she and her team develop assays for early as well as late stage therapeutic programs headed to the clinic. She works across multiple therapeutic modalities such as gene therapy\, large molecules as well as small molecule drug candidates. Prior to Denali Therapeutics\, Dr. Iyer was employed at Perlara PBC\, a drug discovery company in San Francisco committed to finding therapeutics for rare genetic diseases. During her time there\, she specialized in all aspects of the therapeutic discovery process- creating tools to study a specific disease\, conducting drug discovery screens and identifying biomarkers for a successful transition to clinic. In her role\, she also interacted with parents and foundations and laid the foundation for PerlQuests- a patient-driven personalized drug discovery program. With the assistance of clinical KOL’s and parent advocates\, she was involved in generating a roadmap for an n=1 trial for phosphomannomutase 2 deficiency that is currently underway. Since 2020\, Dr. Iyer has been working with the Association of Creatine Deficiencies as their scientific consultant to refine their scientific research roadmap. She brings her expertise in working with rare disease patient groups\, clinical KOL’s and scientific discovery processes to her role with the ACD.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_column_text]Ethan Perlstein\, Ph.D.\nPerlara \nConference Talk Recording \nEthan Perlstein received a Ph.D. in 2006 from Harvard University (Department of Molecular and Cell Biology) while working in the laboratory of Professor Stuart Schreiber. He completed an independent postdoctoral fellowship at the Lewis-Sigler Institute at Princeton University from 2007 to 2012. Since its founding in 2014\, he is CEO of Perlara PBC\, the first biotech PBC that partners with highly motivated families to cure rare genetic diseases. In 2019\, he joined the Christopher & Dana Reeve Foundation as their first Chief Scientific Officer\, but due to unexpected COVID-related financial constraints\, his team was let go in Spring 2020. Recently\, he became CEO of a new nonprofit\, co-founded by Dr. Tim Yu and Julia Vitarello\, whose mission is to make personal programmable medicines accessible to everyone.[/vc_column_text][/vc_column][vc_column width=”1/2″][vc_column_text]Sylvia Stockler\, MD\, and Peter Axerio-Cilies\, Ph.D.\nBC Children’s Hospital & Department of Pediatrics UBC;\nDjavad Mowafaghian Centre for Brain Health\, UBC \nDr. Stockler is a Professor of Pediatrics at the Department of Pediatrics (UBC) and head of the Division for Biochemical Genetics at BC Children’s Hospital. She authored the first description of GAMT and AGAT deficiency and has published several articles on cerebral creatine deficiency syndromes. Her research focuses on the diagnosis and treatment of genetic conditions causing intellectual disability as well as on the evaluation of outcomes of treatment outcomes using innovative trial methodologies and outcome measures. Dr. Stockler has recently started a collaboration with Dr. Axerio-Cilies from the Department of Medicine and Psychiatry at the Djavad Mowafaghian Centre for Brain Health (UBC) with the aim to develop and evaluate new treatments for creatine transporter (SLC6A8) deficiency. He has extensive experience in generating lead drug prototypes for various protein targets associated with neurological disorders and rare genetic diseases (including solute carrier transporters)\, which have led to numerous successful patents and publications.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_column_text]Aloïse MABONDZO\, PhD\, HDR\nCERES BRAIN THERAPEUTICS \nConference Talk Recording \nDr. Aloïse Mabondzo joined the CEA\, the Life Science Division\, in May of 1998 as the leader of a neurovascular pharmacology Lab with a strong focus on in vitro blood-brain barrier (BBB) modeling and pathophysiology of the brain. His Lab has developed fully characterized in vitro screening tools allowing the optimization of the molecules under development for brain penetration. His innovative research has made possible the development of research programs in the neuroscience field: Alzheimer’s disease\, nanotoxicology\, ischemic hypoxia encephalopathy\, X-linked creatine transporter deficiency disease. Dr. Aloïse Mabondzo is author or co-author of 59 articles in peer-reviewed journals\, six patents\, gave lectures as a lecturer and as well as guest speaker\, poster presentation in the scientific congress\, and he often reviews articles for scientific journals. He has directed twelve Ph.D. students\, and six postdoctoral positions have been part of his team. As a Neuroscientist\, Dr. Mabondzo aims to bridge the gap between experimental research and clinical therapy for cerebral diseases. He is a co-founder of CERES BRAIN THERAPEUTICS\, a spin-off from the French alternative energies and Atomic Energy Commission (CEA)\, committed to focusing its resources to the preclinical development of advance drug over coming years in order to provide CTD patients with a therapeutic solution to deliver creatine in the brain.[/vc_column_text][vc_column_text][/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Dr. Lee M. Graves\, Ph.D.\nUniversity of North Carolina \nConference Talk Recording \nDr. Lee Graves is a Professor in the Department of Pharmacology at the University of North Carolina at Chapel Hill. He is currently the Faculty Director of the UNC Michael Hooker Proteomics Facility at UNC. His laboratory applies proteomics to study the biological mechanisms of disease as well as the pharmacological responses to targeted therapeutics. Over the last 25 years\, his lab has focused on cellular adaptations to protein kinase inhibitors in cancer biology and other diseases. Recently his research has combined these studies with metabolomics analyses to gain a deeper understanding of mechanisms of acquired drug resistance. He has served on the Editorial Board of multiple journals (JBC\, Mol Pharm\, BBA-GEN)\, been a co-founder of two companies (KinoDyn\, ViroKyn)\, and has trained multiple graduate students and post-doctoral fellows.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Fady Hannah-Shmouni\, MD\, FRCPC\nNIH \nConference Talk Recording \nFady Hannah-Shmouni\, M.D.\, DABIM\, AHSCP\, FRCPC\, is a clinician investigator in endocrinology\, hypertension\, and biochemical genetics with clinical and research interests in the diagnosis and management of familial endocrinopathies\, endocrine hypertension disorders\, and inborn metabolism errors. For NICHD\, he serves as director of the Office of Education’s Graduate Medical Education (GME); chief of the internal medicine\, endocrinology\, and genetics inpatient ward and outpatient endocrinology; associate program director of NIH’s Inter-Institutes Endocrinology & Metabolism Fellowship Program; and principal investigator of endocrine genetic and hypertension disorders for the Stratakis Laboratory’s section on endocrinology and genetics. He is the principal investigator on two NICHD protocols: “Clinical and Molecular Characteristics of Primary Aldosteronism in Blacks” and “Observational Study of Males with Creatine Transporter Deficiency.”[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_column_text]Matthew R. Skelton\, Ph.D. \nCincinnati Children’s Research Foundation \nConference Talk Recording \nDr. Skelton received his Ph.D. in Molecular and Developmental Biology from the University of Cincinnati in 2006. His graduate work focused on the effects of prenatal MDMA exposure on learning and memory in rats. As a post-doctoral fellow at CCRF\, Dr. Skelton characterized the first Slc6a8 knockout model. Dr. Skelton joined the CCRF faculty in 2011 where his lab focuses on the biological underpinnings of the cognitive deficits caused by CTD. He has over 50 publications (12 related to creatine) and has received funding from the NIH\, pharmaceutical companies\, and private foundations. He has routinely served as a reviewer for academic journals and grant review committees. Dr. Skelton has proudly served on the ACD SMAB since its inception and is even prouder to be the first recipient of an ACD grant in 2018.[/vc_column_text][vc_column_text][/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Gai Ayalon\, Ph.D.\nUltragenyx Pharmaceutical Inc. \nGai Ayalon\, Ph.D.\, is a neuroscientist and a Senior Director at Ultragenyx Pharmaceutical Inc.\, a Bay Area\, California company dedicated to developing therapeutics for rare and ultra-rare diseases. He is currently leading teams dedicated to developing treatments for neurodevelopmental disorders. Previously\, Dr. Ayalon was a scientist at Genentech\, where he led drug discovery programs focused on immunotherapeutic approaches to neurodegenerative diseases. Dr. Ayalon received his Ph.D. from the Hebrew University Medical School in Jerusalem\, Israel\, and conducted his postdoctoral research at Duke University Medical Center.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Jonathan Schlebach\, Ph.D. \nIndiana University\, Bloomington \nConference Talk Recording \nJonathan received a BS in Biochemistry from the University of Illinois at Urbana-Champaign in 2007 after which he began his graduate studies at Purdue University in the laboratory of Chiwook Park. In 2012 he received a PhD for his studies on the kinetics and thermodynamics of integral membrane protein folding. Jonathan went on to pursue postdoctoral training in the laboratory of Charles R. Sanders at the Vanderbilt University School of Medicine\, where he was awarded a Ruth L. Kirschstein National Research Service Award from the NIH for his studies of integral membrane protein misfolding and disease.\nHis current studies involve the physiochemical coupling between the folding and trafficking of integral membrane proteins in the cell. His laboratory utilizes an interdisciplinary array of biophysical\, analytical\, and cellular techniques to gain mechanistic insights into the key reactions that modulate the cellular proteostasis of integral membrane proteins and ultimately give rise to the molecular basis of disease. His group is also interested in adapting these tools and perspectives to address emerging issues in precision medicine.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_column_text]Lara Gechijian\, Ph.D.\nSenior Scientist\, Jnana Therapeutics \nLara Gechijian received her Ph.D. in Biomedical and Biological Sciences with a concentration in Therapeutics from Harvard Medical School in 2018. She conducted her graduate research in the labs of Dr. Jay Bradner and Dr. Nathanael Gray\, where she focused on targeted degradation as an approach to developing novel cancer therapeutics. Lara is currently a biochemist at Jnana Therapeutics\, a biotechnology company dedicated to developing new medicines for metabolic diseases.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Laura Baroncelli\, Ph.D.\nNeuroscience Institute CNR Pisa \nConference Talk Recording \nDr. Baroncelli graduated in Biology from the University of Pisa in 2005 and trained in the PhD program in Neurobiology at the Scuola Normale Superiore from 2006 to 2009. Following a fellowship at Scuola Normale Superiore\, she was awarded in 2010 a two-year post-doctoral fellowship at the Accademia Nazionale dei Lincei\, in Italy. Since 2011\, she is Tenured Researcher at the Neuroscience Institute (IN) of CNR in Pisa. Recently\, she was awarded a six-month travel grant within the program “Post-Doctoral Fellowship- 2017” of Fondazione Umberto Veronesi for a training period with two-photon microscopy at the University Medical Center of Göttingen. Her scientific production was highly fruitful leading to the publication of 36 original research papers in international peer-reviewed journals (H index: 18). She was awarded personal fundings by Fondazione Roma\, LUMOS Pharma\, Italian Ministry of Health\, Lejeune Foundation and Telethon for the study of creatine-related disorders. She is also Academic Editor of Neural Plasticity and Scientific Report\, and reviewer for various international journals and national agencies.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Prof. Olivier Braissant\, Ph.D.\nService of Clinical Chemistry\, University Hospital of Lausanne\, Switzerland \nConference Talk Recording \nWorking on cerebral creatine for many years\, I contributed to the understanding of how creatine can be transported from periphery to the central nervous system\, as well as how creatine can be synthesized and transported within the brain. Our work also contributed to better understand creatine metabolism and transport in the brain under AGAT\, GAMT\, and SLC6A8 deficiencies (CCDS). We are currently developing and working on several in vitro and in vivo models of CCDS\, including a new knock-in rat model of creatine transporter deficiency which I will present at the CCDS 2020 Virtual Conference.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_column_text]Jagdeep S. Walia\, MD\, FRCPC\, FCCMG\nQueen’s University \nConference Talk Recording \nDr. Jagdeep Walia is a full-time faculty\, Head of the Division of Medical Genetics\, and Director of research in the Department of Pediatrics at Queen’s University. He is an Associate Professor and a Medical Geneticist. Dr. Walia is a graduate of the Guru Nanak Dev University School of Medicine. He did his post-doctoral fellowship at the University of Toronto and Medical Genetics training at the University of Manitoba. He joined the Department in 2012 and also started a research program in 2013. His work in Medical Genetics includes consultation on a broad range of genetic problems in children and adults including Cancer\, Prenatal\, Metabolics\, and General Genetics. He teaches undergraduate students and residents in genetics.\nHe has an active clinical and basic genetics research program. His lab is focused on developing novel gene therapy approaches for inherited and acquired neurodegenerative disorders especially focusing on GM2-gangliosidoses and Creatine Deficiency disorders.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Ameya Kasture\, Ph.D\nUniversity of Vienna\, Vienna\, Austria \nConference Talk Recording \nAmeya Kasture is a postdoctoral researcher at the University of Vienna\, Vienna\, Austria. His research examines the use of pharmacological compounds to remedy protein misfolding. He primarily focuses on a group of proteins called solute carrier 6 (SLC6) transporters\, which include transporters for creatine\, amino acids\, biogenic amines\, and osmolytes. Mutations in the genes encoding the SLC6 transporters are linked to various diseases. In the case of creatine transporter\, the disease-causing mutations retain the transporter in the endoplasmic reticulum\, thereby affecting its surface availability. Pharmacological approaches can be used to restore the surface availability of at least some of the disease-causing mutations. Additionally\, he uses Drosophila melanogaster as a model organism to understand dopamine and serotonin neurotransmission. He also teaches undergraduate and graduate students at the Department of Neuroscience and Developmental Biology\, University of Vienna. He completed an MSc in Molecular Neuroscience at the University of Bristol\, UK\, and a Ph.D. in Cell Communication in Health and Disease at the Medical University of Vienna\, Austria.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Dr. Claire Colas\, Ph.D.\nUniversity of Vienna \nConference Talk Recording \nClaire Colas is a postdoctoral scientist in the Pharmacoinformatics research group (University of Vienna). She completed her Ph.D. in 2011 at the Pasteur Institute in Paris\, France\, and worked for two years as a postdoctoral scientist at the Institut de Chimie des Substances Naturelles at Gif-sur-Yvette\, France. Since 2013\, Dr. Colas’ research has been focused on the structural characterization of Solute Carrier (SLC) transporters. First at the Mount Sinai School of Medicine in New-York City (2013-2018) and then in Vienna (2018-present)\, Dr. Colas has been working on distinct SLC families\, involved in various diseases and disorders.\nDr. Colas uses various computational methods such as homology modeling and molecular docking to explore the structural determinants defining the substrate specificities of SLCs.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_column_text]Prof. Emil Alexov\, Ph.D.\nClemson University \nConference Talk Recording \nEmil Alexov is a professor at Clemson University\, SC\, USA. He is affiliated with the Departments of Physics and Astronomy\, Material Sciences\, and the School of Nursing HealthCare Genetics. His research is focused on understanding the molecular effects caused by human DNA variants associated with diseases and developing treatments to eliminate these effects. Of particular interest are monogenic diseases and X-linked disorders. He also develops methods to predict the pathogenicity of mutations and their effect on the thermodynamic properties of macromolecules and their assemblages.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Axel Neu\, MD\nDepartment of Pediatrics\, UKE\, Hamburg\, Germany \nAxel Neu is a child neurologist at the university hospital Hamburg Eppendorf. His main interests are ion channel disorders and disorders of creatine metabolism. His research group Experimental Neuropediatrics works on the functional consequences of creatine deficiency in transgenic mouse models.[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text]Nicola Longo\, MD\, Ph.D. \nUniversity of Utah \nConference Talk Recording \nDr. Nicola Longo received his M.D. and Ph.D. in molecular biology and pathology from the University of Parma\, School of Medicine in Italy. He then trained in Pediatrics\, Medical and Biochemical Genetics at Emory University in Atlanta\, Georgia\, USA. Currently\, Dr. Longo is Professor of Pediatrics and Adjunct Professor of Pathology\, Nutrition and Integrative Physiology at the University of Utah in Salt Lake City\, UT. He is also Chief of the Division of Medical Genetics\, Director of the Metabolic Service in the Department of Pediatrics\, Director of the Training Program in Medical Biochemical Genetics and Medical co-Director of the Biochemical Genetics Lab at ARUP Laboratories in Salt Lake City. His research concerns the molecular bases of metabolic disorders\, their natural history\, and their identification through newborn screening.\nHe has a long-standing interest in membrane transporters for which he has worked on amino acid\, glucose\, carnitine and creatine transporters. He follows several patients with brain creatine deficiency and has an active interest in developing new methods to facilitate their detection by newborn screening\, improving existing therapies and developing new ones for these conditions.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_row_inner][vc_column_inner][vc_separator border_width=”4″][/vc_column_inner][/vc_row_inner][/vc_column][vc_column][vc_single_image image=”17562″ img_size=”full” alignment=”center” onclick=”img_link_large”][vc_separator border_width=”4″][/vc_column][/vc_row][vc_row][vc_column][vc_btn title=”Full Conference Proceedings PDF” style=”classic” align=”center” link=”url:http%3A%2F%2Fcreatineinfo.org%2Fwp-content%2Fuploads%2F2020%2F04%2FFinal-Virtual-Conerence-Program.pdf|target:_blank”][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/virtual-conference-2020/
CATEGORIES:Symposium
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200802
DTEND;VALUE=DATE:20200803
DTSTAMP:20260510T163004
CREATED:20190410T235516Z
LAST-MODIFIED:20200708T024413Z
UID:7111-1596326400-1596412799@creatineinfo.org
SUMMARY:Walk for Strength 2020
DESCRIPTION:[vc_row full_width=”stretch_row” css=”.vc_custom_1554925123026{background-color: #0d2947 !important;}”][vc_column][vc_column_text css=”.vc_custom_1590597617727{padding-top: 5px !important;padding-left: 10px !important;background-color: #062849 !important;border-radius: 5px !important;}”] \nSunday\, August 2nd\, 2020\n[/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text] \nThis year we’re walking as one big team!\n[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row full_width=”stretch_row_content_no_spaces” content_placement=”middle” css=”.vc_custom_1523336611845{background-color: #ffffff !important;}”][vc_column css=”.vc_custom_1523072040122{background-color: #ffffff !important;}”][vc_single_image image=”16697″ img_size=”506×369″ alignment=”center” css_animation=”flipInY” css=”.vc_custom_1590598427909{background-color: #ffffff !important;}”][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”16747″ img_size=”medium”][/vc_column][vc_column width=”1/2″][vc_empty_space height=”150px”][vc_column_text]This year\, while respecting local health guidance\, CCDS families\, friends\, researchers\, and supporters worldwide will be walking in support of those affected by GAMT\, AGAT\, and CTD. Hold your family’s walk when and where it suits you and join us afterward at the Community Social Hour. #socialdistance #quarantine2020 #keepcalmandwalkon \n*Register by July 4 to receive a “Keep Calm & Walk On” walk shirt![/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_single_image image=”5036″ img_size=”1920×600″ alignment=”center”][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1516844439530{background-color: #f5f5f5 !important;}”][vc_column][vc_column_text] \nRegister to Walk or Support a Team\n[/vc_column_text][vc_row_inner][vc_column_inner width=”1/2″][vc_column_text] \nRegistration Details\nRegistration is $20 for adults and $15 for youth. \nRegistration includes a 2020 walk shirt if received by July 1st. After July 1st\, a shirt is not included with registration. \nAsk Friends and Family for Support\nIf you are unable to participate in the Walk for Strength but would still like to show your support\, please make a donation below. \nGroup Discount\nGroups of four or more receive 15% off registration by using code “WFSGROUP”.[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text] \nBecome a Sponsor or Recruit a Sponsor\nSponsors are recognized on the back of t-shirts\, on our website\, and on our Facebook\, Instagram\, and Twitter feeds. The ACD has a social media reach of over 180\,000 views per year. \nIf you have a business you’d like to approach\, write them a personalized letter about why CCDS advocacy\, education\, and research are important to you and include our Walk Sponsorship Information PDF. Sponsorship information must be received by July 3 in order to be featured on the t-shirts. \nFor more information\, contact andrea@creatineinfo.org.[/vc_column_text][/vc_column_inner][/vc_row_inner][vc_raw_html]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[/vc_raw_html][/vc_column][/vc_row][vc_row css=”.vc_custom_1523072188788{background-color: #ffffff !important;}”][vc_column css=”.vc_custom_1523072220244{background-color: #ffffff !important;}”][vc_column_text css=”.vc_custom_1523294682111{background-color: #ffffff !important;}”] \nSponsors\n[/vc_column_text][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1523068988712{background-color: #ffffff !important;}”][vc_column css=”.vc_custom_1558114072380{background-color: #ffffff !important;}”][vc_row_inner content_placement=”middle”][vc_column_inner width=”1/3″][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”16695″ img_size=”medium”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/walk-for-strength-2020/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190906
DTEND;VALUE=DATE:20190908
DTSTAMP:20260510T163004
CREATED:20190527T205524Z
LAST-MODIFIED:20190722T155923Z
UID:7664-1567728000-1567900799@creatineinfo.org
SUMMARY:CCDS Workshop -Rotterdam
DESCRIPTION:[vc_section css=”.vc_custom_1562958237098{background-color: #c0378f !important;}”][vc_row][vc_column][vc_column_text] \nChoose a Language\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″ el_id=”english-box”][vc_cta h2=”English” txt_align=”center” shape=”square” style=”flat”][/vc_cta][/vc_column][vc_column width=”1/3″ el_id=”dutch-box”][vc_cta h2=”Dutch” txt_align=”center” shape=”square” style=”flat”][/vc_cta][/vc_column][vc_column width=”1/3″ el_id=”french-box”][vc_cta h2=”Française” txt_align=”center” shape=”square” style=”flat”][/vc_cta][/vc_column][/vc_row][/vc_section][vc_row css=”.vc_custom_1561668931427{margin-top: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}”][vc_column][vc_column_text] \nSponsors & Partners\n[/vc_column_text][vc_raw_html]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[/vc_raw_html][/vc_column][/vc_row][vc_row disable_element=”yes” css=”.vc_custom_1563218696228{margin-top: -20px !important;margin-bottom: 0px !important;border-top-width: 0px !important;border-bottom-width: 0px !important;padding-top: 0px !important;padding-bottom: 0px !important;}”][vc_column width=”1/3″][vc_single_image img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://www.alzchem.com/” css=”.vc_custom_1563218543457{margin-top: 0px !important;}”][/vc_column][vc_column width=”1/3″][/vc_column][vc_column width=”1/3″][vc_single_image img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://everylifefoundation.org/” css=”.vc_custom_1563218571682{margin-top: -60px !important;}”][/vc_column][/vc_row][vc_column_inner width=”1/2″][/vc_column_inner][vc_column_text][/vc_column_text]
URL:https://creatineinfo.org/event/ccds-workshop-rotterdam/
CATEGORIES:Symposium
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20190408T133000
DTEND;TZID=America/Los_Angeles:20190408T173000
DTSTAMP:20260510T163004
CREATED:20181129T050830Z
LAST-MODIFIED:20190320T154312Z
UID:6433-1554730200-1554744600@creatineinfo.org
SUMMARY:CCDS Workshop at SIMD
DESCRIPTION:For more information\, and to register for this event\, please visit creatineinfo.org/simd.
URL:https://creatineinfo.org/event/ccds-workshop-at-simd/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20180726T183000
DTEND;TZID=America/Chicago:20180729T120000
DTSTAMP:20260510T163004
CREATED:20180124T042202Z
LAST-MODIFIED:20230505T222445Z
UID:4516-1532629800-1532865600@creatineinfo.org
SUMMARY:2018 CCDS Scientific + Patient Symposium
DESCRIPTION:The first-ever in-person CCDS Symposium was held in Austin\, Texas with patients\, clinicians\, and researchers attending July 26 through July 29. Learn more here. Find the recordings of talks here.
URL:https://creatineinfo.org/event/ccds-symposium-2018/
CATEGORIES:Symposium
ATTACH;FMTTYPE=image/png:https://creatineinfo.org/wp-content/uploads/2018/01/conferenceheader-e1516495325145.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180701
DTEND;VALUE=DATE:20180702
DTSTAMP:20260510T163004
CREATED:20180609T150018Z
LAST-MODIFIED:20180503T204351Z
UID:4536-1530403200-1530489599@creatineinfo.org
SUMMARY:Walk For Strength
DESCRIPTION:Walk For Strength\nJune 9\, 2018\n\nRegistration is now open for the third annual Walk for Strength. This walk is meant to be participated in by all CCDS families in their local communities. Your group may be as small as 1 or as large as you can recruit! Email us for more ideas and flyers to distribute\, etc. at info@creatineinfo.org.
URL:https://creatineinfo.org/event/walk-for-strength-4/
CATEGORIES:Community Events
ATTACH;FMTTYPE=image/jpeg:https://creatineinfo.org/wp-content/uploads/2016/12/Walk-For-Strength-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170930
DTEND;VALUE=DATE:20171001
DTSTAMP:20260510T163004
CREATED:20180124T050610Z
LAST-MODIFIED:20180124T050610Z
UID:4542-1506729600-1506815999@creatineinfo.org
SUMMARY:Rockin' For A Cause
DESCRIPTION:Rockin’ For A Cause\nDripping Springs\, TX\nSaturday\, September 30\, 2017\n\nACD’s first ever benefit concert\, “Rockin’ for a Cause”\, was held in Austin\, Texas at the Mercer Street Dance Hall. Live music was provided by Worn Out Souls and headliner Micky and the Motorcars. The event brought in over 200 people in support of CCDS and raised over $52\,000! All proceeds from Rockin’ for a Cause go directly toward supporting programs for research\, education\, newborn screening advocacy efforts\, and patient support initiatives.
URL:https://creatineinfo.org/event/rockin-for-a-cause-2/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170610
DTEND;VALUE=DATE:20170611
DTSTAMP:20260510T163004
CREATED:20180124T045820Z
LAST-MODIFIED:20180124T045904Z
UID:4529-1497052800-1497139199@creatineinfo.org
SUMMARY:Walk For Strength
DESCRIPTION:Saturday\, June 10th\nHost a local walk\, join an existing team\, or make a donation of support! Here’s how: \n[columns]\n[column layout=”two border”] \nTo host a local walk:\n\nChoose a Team Name\, Walk Location\, and Start Time.\nLocations may include neighborhoods\, parks\, hike and bike trails\, school tracks\, etc.\nGet Registered!\nRegister Here \nBe sure to enter your Team Name and share it with friends and family that plan to join your team. Get registered by May 15th. **Registrations received after May 15th will not include a shirt.\nNote: Shirts will be sent to the host to distribute on walk day.\nInvite Your Friends and Neighbors to Join.\nIdeas include: Create a Facebook page for your team or send out a letter or email to friends and loved ones that you would like them to join in your walk. Explain why you are walking and what their support means to you! No team is too small! Contact Heidi with questions. If your group is large\, we can help with the logistics.\nWalk on June 10th & Take Pictures to Share!\nShare your walk day pics by emailing them to heidi@creatineinfo.org.\n\n[/column]\n[column layout=”two border last”] \nTo join an existing team or walk alone:\n\nGet Registered!\nRegister Here \nBe sure to enter the *Team Name created by your walk host or enter “SOLO” if you’ll be walking alone.\nGet Your Gear.\nIf you are walking with a team\, your shirt will be sent to the host to distribute on walk day. *If you are walking alone\, enter “SOLO” for your team name\, and your shirt will be mailed directly to you.\n\nShow of Support\nIf your friends and family can’t make it on walk day\, but want to support your team\, they can \nDonate Here \nto make a donation. Choose “Walk for Strength” and enter the team’s name in the “in honor or memory of” section. \n[/column]\n[/columns]
URL:https://creatineinfo.org/event/walk-for-strength-2/
CATEGORIES:Community Events
ATTACH;FMTTYPE=image/png:https://creatineinfo.org/wp-content/uploads/2018/01/Screen-Shot-2018-01-23-at-10.57.38-PM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20130612
DTEND;VALUE=DATE:20130616
DTSTAMP:20260510T163004
CREATED:20180124T052041Z
LAST-MODIFIED:20180124T052041Z
UID:4581-1370995200-1371340799@creatineinfo.org
SUMMARY:Exhibit at the UMDF Mitochondrial Medicine 2013 Symposium
DESCRIPTION:Exhibit at the UMDF Mitochondrial Medicine 2013 Symposium\nNewport Beach\, California\nJune 12 – 15\, 2013 \nThe ACD was thrilled to exhibit at the UMDF Mitochondrial Medicine 2013 Symposium that was held in Newport Beach\, California. \nThis symposium encourages the exchange of information and cultivates networking among physicians\, researchers\, patients and families for mitochondrial diseases. Linda Cooper and Kim Tuminello were in attendance for the ACD and met many wonderful people! They had a very active booth and were able to connect with professionals that gave them guidance related to patient advocacy groups. The most frequently shared advice to the ACD was to increase our patient registry! This is a must in accomplishing our goals. \nWe take this information to heart and will actively work on connecting with other organizations\, the medical community at large\, lab facilities\, patients\, and families to improve our patient registry. The ACD will continue to exhibit at future conferences that connect with Cerebral Creatine Deficiency Syndromes. \nLook who else was at the UMDF Symposium.
URL:https://creatineinfo.org/event/exhibit-at-the-umdf-mitochondrial-medicine-2013-symposium/
CATEGORIES:Exhibits & Workshops
END:VEVENT
END:VCALENDAR