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DTSTART:20211107T090000
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TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20170312T080000
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TZOFFSETTO:-0600
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DTSTART:20171105T070000
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TZOFFSETTO:-0500
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DTSTART:20180311T080000
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TZOFFSETTO:-0600
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DTSTART:20181104T070000
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DTSTART:20190310T080000
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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20231006T130000
DTEND;TZID=America/Denver:20231006T143000
DTSTAMP:20260430T104825
CREATED:20230916T171614Z
LAST-MODIFIED:20230926T070108Z
UID:59383-1696597200-1696602600@creatineinfo.org
SUMMARY:CCDS Expert Panel Webinar #4
DESCRIPTION:Learn more about the Expert Panel webinar series and register here. \n 
URL:https://creatineinfo.org/event/ccds-expert-panel-webinar-4/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230818T130000
DTEND;TZID=America/Denver:20230818T160000
DTSTAMP:20260430T104825
CREATED:20230505T163323Z
LAST-MODIFIED:20230505T163626Z
UID:58957-1692363600-1692374400@creatineinfo.org
SUMMARY:2023 CCDS Virtual Conference - Caregiver Session
DESCRIPTION:The Caregiver Session is scheduled one week prior to the main conference sessions and will focus on parent training in the following categories: supporting sibling relations and the non-CCDS sibling experience\, sleep training for CCDS patients\, and identifying and managing CCDS behavior challenges. \nVisit the conference page and register today by clicking here!
URL:https://creatineinfo.org/event/2023-ccds-virtual-conference-caregiver/
CATEGORIES:Community Events,Symposium
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210315
DTEND;VALUE=DATE:20210316
DTSTAMP:20260430T104825
CREATED:20210105T202506Z
LAST-MODIFIED:20210312T141458Z
UID:18437-1615766400-1615852799@creatineinfo.org
SUMMARY:CreatineInfo Registry Launch
DESCRIPTION:The ACD\, in partnership with NORD\, is launching a Natural History Study Patient-reported Registry on March 15th. Join the registry and help us further research for a better quality of life for those impacted by Creatine Deficiencies. Join at creatineinfo.iamrare.org.
URL:https://creatineinfo.org/event/creatineinfo-registry-launch/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20210228T080000
DTEND;TZID=America/Denver:20210228T233000
DTSTAMP:20260430T104825
CREATED:20210105T202256Z
LAST-MODIFIED:20210224T013623Z
UID:18434-1614499200-1614555000@creatineinfo.org
SUMMARY:Rare Disease Day 2021
DESCRIPTION:February 28th is Rare Diseases Day. This year\, we will raise awareness AND empower research!  Stay tuned for the launch of our CreatineInfo Registry. Together we will search for answers and help move research forward. \nTo learn more\, contact registry@creatineinfo.org or sign up for updates here: https://bit.ly/ACDpatientregistry.
URL:https://creatineinfo.org/event/rare-disease-day-2021/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210201
DTEND;VALUE=DATE:20210202
DTSTAMP:20260430T104825
CREATED:20200906T035007Z
LAST-MODIFIED:20210105T202002Z
UID:17748-1612137600-1612223999@creatineinfo.org
SUMMARY:CCDS Day 2021
DESCRIPTION:  \nCCDS Day 2021 is February 1st. How has CCDS changed your story? If you’d like to participate in our #CCDSDay2021 Campaign\, send us a picture of your child/family and a quote answering this question. Email faith@creatineinfo.org.  \nPlease also sign and complete this release form\, giving us permission to share your picture and quote.
URL:https://creatineinfo.org/event/ccds-day-2021/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20210101
DTSTAMP:20260430T104825
CREATED:20200906T032144Z
LAST-MODIFIED:20201103T015207Z
UID:17743-1604188800-1609459199@creatineinfo.org
SUMMARY:Holiday Heroes Fundraiser
DESCRIPTION:Holiday Heroes is our annual fundraiser and this year we will be fundraising to support the continuation of Gene Therapy Advancement Awards in 2021 as well as drug development research. Visit our Holiday Heroes page to learn more and donate now! \nLearn more about the initiatives funded by the 2020 Holiday Heroes at ACD’s research strategy page and the Gene Therapy Consortium page.
URL:https://creatineinfo.org/event/hhf/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20200802T140000
DTEND;TZID=America/Los_Angeles:20200802T150000
DTSTAMP:20260430T104825
CREATED:20200708T022854Z
LAST-MODIFIED:20200802T184812Z
UID:17089-1596376800-1596380400@creatineinfo.org
SUMMARY:Keynote Speaker - Dr. Judith Miller
DESCRIPTION:Keynote: Lessons Learned From 2 Years of the Vigilan Natural History Study\nDr. Judith Miller\, Ph.D.\, Children’s Hospital of Pennsylvania\nClick Here for the Direct Webinar Link\nDr. Judith Miller is a clinical psychologist with 25 years’ experience in developmental disorders. She has a joint appointment as Assistant Professor in both the Psychiatry and Pediatrics departments at the Children’s Hospital of Philadelphia (CHOP)\, which is affiliated with the Perelman School of Medicine at the University of Pennsylvania. She is also the Clinical Training Director at the Center for Autism Research\, and the Associate Director for the Leadership in Education in Neurodevelopmental Disorders (LEND) program at CHOP.  She has been studying Creatine Transporter Deficiency since 2015 and is the coordinating Principal Investigator for the Vigilan Observational Study. \nAbstract:\nThe Vigilan Observational Study of Creatine Transporter Deficiency is the largest and longest-running natural history study of a creatine deficiency syndrome. Our goals are to study how children with CTD develop over time and to identify the best measures for a future interventional study.  We now have nine sites across the US and Canada and are approaching our fourth year\, with almost 50 participants completing nearly 200 visits.  Children and families have been participating in extensive testing and medical evaluations every 6 months\, with an additional visit to the National Institutes of Health (NIH) in Washington DC for imaging and other biomarker studies.  While the study is still ongoing\, we now have sufficient data to examine how children with CTD develop over time\, including the earliest symptoms that led to a CTD diagnosis\, as well as the children’s cognitive and intellectual development\, self-help skills\, behavior\, and co-occurring medical conditions.  Dr. Miller will present the preliminary findings\, discuss what we’ve learned so far\, and outline how it will inform the next steps for the Vigilan study.
URL:https://creatineinfo.org/event/keynote-speaker/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200802
DTEND;VALUE=DATE:20200803
DTSTAMP:20260430T104825
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:20180701
DTEND;VALUE=DATE:20180702
DTSTAMP:20260430T104825
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:20180228
DTEND;VALUE=DATE:20180301
DTSTAMP:20260430T104825
CREATED:20180124T050107Z
LAST-MODIFIED:20180202T163334Z
UID:4534-1519776000-1519862399@creatineinfo.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day\nWednesday\, February 28\, 2018\nCCDS are considered rare disorders and the ACD is proud to support Rare Disease Day.\nHelp us join with other rare disease groups in spreading Rare Disease and CCDS Awareness on February 28\, 2018. \nRare Disease Day is a worldwide initiative. For more information on this international event\, visit rarediseaseday.org. \nFor more information about Rare Disease Day in the US\, click here. \nShop and support ACD to get your CCDS Awareness merchandise today! \nFor ideas of how to participate in rare disease day and both support this initiative and raise awareness of Cerebral Creatine Deficiency Syndromes\, Click Here. \n\n[horizontal_line style=”4″ margin_top=”10″ margin_bottom=”20″] \nRare Disease Day CCDS Feature:\nTexas Children’s Hospital National featured this CCDS story for Rare Disease Awareness Week: “My Son’s Story”\nhttp://www.texaschildrensblog.org/2015/02/national-rare-disease-awareness-week-my-sons-story/
URL:https://creatineinfo.org/event/rare-disease-day/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180201
DTEND;VALUE=DATE:20180202
DTSTAMP:20260430T104825
CREATED:20180124T050011Z
LAST-MODIFIED:20180929T181850Z
UID:4532-1517443200-1517529599@creatineinfo.org
SUMMARY:CCDS Awareness Day
DESCRIPTION:CCDS Awareness Day\nThursday\, February 1\, 2018\nIt’s official! February 1st is “Cerebral Creatine Deficiency Syndrome Awareness Day.”\nHelp spread awareness of CCDS by celebrating this day in your community.\nWe kicked off our first celebration of CCDS day in 2017 and are already working on plans to make 2018 even better! \nSome ideas for individuals in their hometown include: \n\nCreate a personalized campaign on our Crowdrise Page (Scroll down to the orange button “Create a Fundraiser”\, enter your CCDS story and pictures\, post on Facebook and it links back to support ACD’s campaign!)\nSpeak at your child’s school about CCDS.\nWear CCDS apparel\, available at the ACD Shop.\nDistribute awareness brochures and share your story with pediatricians\, developmental pediatricians\, pediatric neurologists\, and geneticists in your area. For brochures and other materials to share on CCDS Awareness day\, please email info@creatineinfo.org.\nBlog\, Tweet\, Facebook\, and Instagram your CCDS story and pictures of you spreading awareness on CCDS day\, using the hashtags #ccds #ccdsday and #acd.
URL:https://creatineinfo.org/event/ccds-awareness-day/
CATEGORIES:Community Events
ATTACH;FMTTYPE=image/jpeg:https://creatineinfo.org/wp-content/uploads/2015/09/TyPaigeCCDS-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170610
DTEND;VALUE=DATE:20170611
DTSTAMP:20260430T104825
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:20170201
DTEND;VALUE=DATE:20170202
DTSTAMP:20260430T104825
CREATED:20180124T050759Z
LAST-MODIFIED:20180923T204649Z
UID:4546-1485907200-1485993599@creatineinfo.org
SUMMARY:CCDS Day & Rare Disease Day
DESCRIPTION:CCDS Day & Rare Disease Day\nIn 2017 we celebrated our first Cerebral Creatine Deficiency Syndrome Awareness Day on February 1st. This is a fitting time of year to recognize the importance of these rare disorders\, as the world-wide Rare Disease Day falls on February 28th. The month was filled with posts of support and sharing CCDS education amongst all. The sense of community was inspiring as profiles on FaceBook were changed to a virtual CCDS ribbon and pictures were posted of families wearing “We Are Rare” t-shirts. ACD is already planning towards the next CCDS Day\, February 1\, 2018! \n The Robinson Family on CCDS Day
URL:https://creatineinfo.org/event/ccds-day-rare-disease-day/
CATEGORIES:Community Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20151206
DTEND;VALUE=DATE:20151207
DTSTAMP:20260430T104825
CREATED:20180124T051536Z
LAST-MODIFIED:20180124T051536Z
UID:4566-1449360000-1449446399@creatineinfo.org
SUMMARY:Walk Now For Autism Speaks
DESCRIPTION:Walk Now For Autism Speaks\n \nAngel Stadium\nAnaheim\, California\nDecember 6\, 2015
URL:https://creatineinfo.org/event/walk-now-for-autism-speaks/
CATEGORIES:Community Events
END:VEVENT
END:VCALENDAR