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X-WR-CALNAME:Association for Creatine Deficiencies
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X-WR-CALDESC:Events for Association for Creatine Deficiencies
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TZID:America/Los_Angeles
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
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DTSTART:20220313T100000
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DTSTART:20221106T090000
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DTSTART:20230312T100000
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DTSTART:20231105T090000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241203
DTEND;VALUE=DATE:20241204
DTSTAMP:20260430T073233
CREATED:20240729T171423Z
LAST-MODIFIED:20240729T171423Z
UID:61249-1733184000-1733270399@creatineinfo.org
SUMMARY:Giving Tuesday
DESCRIPTION:
URL:https://creatineinfo.org/event/giving-tuesday/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241019T120000
DTEND;TZID=America/New_York:20241019T120000
DTSTAMP:20260430T073233
CREATED:20231124T184432Z
LAST-MODIFIED:20231124T184432Z
UID:59640-1729339200-1729339200@creatineinfo.org
SUMMARY:Sibshops 10/19/2024
DESCRIPTION:[vc_row][vc_column][vc_column_text]Sibshops have three sessions based on age group. \n12:00-12:45 ET youngest group (ages 5-7)\n1:00-2:00 ET middle group (ages 8-12)\n2:00-3:00 ET oldest group (ages 13+) \nLearn more and register here.[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/sibshops-7-8-2-2-2-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240906T150000
DTEND;TZID=America/New_York:20240906T160000
DTSTAMP:20260430T073233
CREATED:20240729T165644Z
LAST-MODIFIED:20240904T201616Z
UID:61237-1725634800-1725638400@creatineinfo.org
SUMMARY:PAReNts 2.0 Webinar
DESCRIPTION:[vc_row][vc_column][vc_column_text css=”.vc_custom_1725480943260{margin-bottom: 0px !important;}”] \nAre you interested in participating in PAReNts 2.0 or learning more about the exciting plans for this project? We are hosting a Zoom Webinar on September 6\, 2024 at 3 pm Eastern Time to learn more.\n*We will have 20 spots for caregivers to join this new project and 3 spots for PAReNts 1.0 participants to join again as mentors. \nComplete this short registration form below to sign up and get the webinar link! \n  \n  \n  \n [/vc_column_text][/vc_column][/vc_row][gravityform id=”151″ title=”true” description=”true” ajax=”false”]
URL:https://creatineinfo.org/event/parents2-webinar/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240630T180000
DTEND;TZID=America/Denver:20240630T220000
DTSTAMP:20260430T073233
CREATED:20240325T175301Z
LAST-MODIFIED:20240621T010825Z
UID:60496-1719770400-1719784800@creatineinfo.org
SUMMARY:Champions for a Cure Gala in Salt Lake City\, UT
DESCRIPTION:[vc_row][vc_column][vc_column_text css=””] \nChampions for a Cure Gala\nFundraiser & Silent Auction Benefitting ACD’s Patient Strong Fund \nReserve your ticket \nSponsor the gala \nOnline Auction \nJune 30\, 2024 • 6:00 – 10:00 PM \nLittle America Hotel\, 500 Main St\, Salt Lake City\, UT \nJoin us for dinner & dancing • All attire welcome! \nAttendees will be from our patient community\, CCDS research\, clinical care\, government policy and the pharmaceutical industry. \nProceeds of the Champions for a Cure Gala will benefit Association for Creatine Deficiencies to support education\, newborn screening and diagnostic advocacy\, family support and research for Cerebral Creatine Deficiency Syndromes.[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/symposium-2024-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240629
DTEND;VALUE=DATE:20240701
DTSTAMP:20260430T073233
CREATED:20231201T223214Z
LAST-MODIFIED:20240229T194948Z
UID:59766-1719619200-1719791999@creatineinfo.org
SUMMARY:2024 CCDS Scientific + Patient Symposium in Salt Lake City\, UT
DESCRIPTION:The 2024 CCDS Scientific + Patient Symposium will be held at the Little America Hotel in Salt Lake City\, Utah. Talks will be presented all day June 29 & 30. We recommend arriving June 28 or earlier and departing July 1 or later. We strongly suggest that you reserve your hotel room(s) as soon as possible. All rooms\, especially connecting family rooms\, are very limited. \nLearn more about the 2024 Symposium. \nSymposium Registration\nSymposium registration is now open! Register by March 15 for the early-bird discount. Click here to register. \nHotel Information\nPlease stay at the Little America Hotel and book in our room block which has a discounted rate of *$169 per night\, is in the main hotel building\, and has the largest size rooms. Use this reservation link or call the hotel directly at +1-800-437-5288 and tell them you are booking in the “Association for Creatine Deficiencies” block. There is no upfront cost to reserve a hotel room. If you are in need of connecting rooms\, or special accommodations\, please call the hotel to ensure those requests are possible and are noted properly. *The symposium room rate is available 3 days pre and post conference as well.
URL:https://creatineinfo.org/event/symposium-2024/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240615
DTEND;VALUE=DATE:20240616
DTSTAMP:20260430T073233
CREATED:20231201T222114Z
LAST-MODIFIED:20240229T195304Z
UID:59753-1718409600-1718495999@creatineinfo.org
SUMMARY:Walk For Strength 2024
DESCRIPTION:Walk For strength is an event that unites people from all over the world in raising CCDS awareness and raising funds to support the ACD Patient Strong program. Be part of a community that is committed to building strength and changing lives! \nClick here to learn more about the Walk For Strength. \nSubscribe to receive updates about upcoming ACD events. 
URL:https://creatineinfo.org/event/walk-for-strength-2024/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240420T120000
DTEND;TZID=America/New_York:20240420T120000
DTSTAMP:20260430T073233
CREATED:20231124T184251Z
LAST-MODIFIED:20231124T184251Z
UID:59636-1713614400-1713614400@creatineinfo.org
SUMMARY:Sibshops 4/20/2024
DESCRIPTION:[vc_row][vc_column][vc_column_text]Sibshops have three sessions based on age group. \n12:00-12:45 ET youngest group (ages 5-7)\n1:00-2:00 ET middle group (ages 8-12)\n2:00-3:00 ET oldest group (ages 13+) \nLearn more and register here.[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/sibshops-7-8-2-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240201T133000
DTEND;TZID=America/New_York:20240201T181500
DTSTAMP:20260430T073233
CREATED:20231124T191209Z
LAST-MODIFIED:20240118T212612Z
UID:59642-1706794200-1706811300@creatineinfo.org
SUMMARY:CCDS Day 2024
DESCRIPTION:[vc_row][vc_column][vc_column_text] \nCCDS Day happens annually on February 1 when we unite our efforts as a community to raise awareness of Cerebral Creatine Deficiency Syndromes! \nThis year\, join us as we launch our collaboration with Drs. Laura Baroncelli\, Michela Fagiolini\, and Irina Anselm at Boston Children’s Hospital to investigate fNIRS as a functional biomarker in GAMT and CTD patients. We will hear from several presenters at this hybrid\, live\, and virtual event—”International Creatine Deficiency Day with BCH\, Harvard Medical School.” \nClick here to register for CCDS Day 2024. Registrants are welcome to join us in person at Boston Children’s Hospital or virtually via zoom. \nSubscribe to receive updates about upcoming ACD events. [/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/ccds-day-2023-2-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240127T120000
DTEND;TZID=America/New_York:20240127T120000
DTSTAMP:20260430T073233
CREATED:20231124T183940Z
LAST-MODIFIED:20240206T153603Z
UID:59633-1706356800-1706356800@creatineinfo.org
SUMMARY:Sibshops 1/27/2024
DESCRIPTION:[vc_row][vc_column][vc_column_text]Sibshops have three sessions based on age group. \n12:00-12:45 ET youngest group (ages 5-7)\n1:00-2:00 ET middle group (ages 8-12)\n2:00-3:00 ET oldest group (ages 13+) \nLearn more and register here.[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/sibshops-7-8-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231130
DTEND;VALUE=DATE:20231201
DTSTAMP:20260430T073233
CREATED:20231124T183528Z
LAST-MODIFIED:20231124T183528Z
UID:59631-1701302400-1701388799@creatineinfo.org
SUMMARY:ACD Fellowship Applications Due
DESCRIPTION:ACD is pleased to announce a call for applications for research fellowships towards advancing knowledge of Cerebral Creatine Deficiency Syndromes. All topics will be considered but preference will be given to proposals that facilitate progress to the clinic\, e.g. method/assay development for biomarkers\, model/reagent development\, drug screening\, etc. \nThe deadline to apply is November 30\, 2023. Fellowship awards carry a letter of recognition and funding for one year with the option to re-apply. \nClick here to learn more and apply.
URL:https://creatineinfo.org/event/acd-fellowship-applications-due/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231128
DTEND;VALUE=DATE:20240101
DTSTAMP:20260430T073233
CREATED:20231124T183133Z
LAST-MODIFIED:20231201T223447Z
UID:59628-1701129600-1704067199@creatineinfo.org
SUMMARY:Holiday Heroes 2023
DESCRIPTION:Holiday Heroes ACD’s most important fundraising event of the year! Our goal is to raise $350\,000 for our exciting 2024 research initiatives. Be a part of this community effort and help change lives for those living with CTD\, AGAT\, and GAMT! The Holiday Heroes campaign runs from November 28 to December 31\, 2023 \nClick here to donate today. \nJoin our fundraiser!
URL:https://creatineinfo.org/event/holiday-heroes-launch/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231117T150000
DTEND;TZID=America/New_York:20231117T160000
DTSTAMP:20260430T073233
CREATED:20231102T230005Z
LAST-MODIFIED:20231102T230737Z
UID:59549-1700233200-1700236800@creatineinfo.org
SUMMARY:Community Chat Series: Dr. Steve Baker
DESCRIPTION:[vc_row][vc_column][vc_single_image image=”59552″ img_size=”800×450″][vc_column_text]ACD is launching a “Community Chat” series of meetings in which we will discuss a topic with the community\, have ‘Ask Me Anything’ meetings with researchers\, and more! Our first meeting will be with Dr. Steven Baker to learn about the progress his team has made in year 1 of the Creatine Deficiency Research Center and to hear their plans for research in year 2. \nJoin us on November 17 at 3pm Eastern Time. The meeting will be broadcast on Facebook live and we will be watching the chat for questions so be sure to join us live! Our Facebook page is “Association for Creatine Deficiencies.”[/vc_column_text][vc_btn title=”Sign up for this Community Chat event” link=”url:https%3A%2F%2Fcreatineinfo.org%2Fevent%2Fcommunity-chat-series-dr-steve-baker%2F|title:Sign%20up%20for%20Community%20Chat|target:_blank”][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/community-chat-series-dr-steve-baker/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20231006T130000
DTEND;TZID=America/Denver:20231006T143000
DTSTAMP:20260430T073233
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;VALUE=DATE:20230825
DTEND;VALUE=DATE:20230827
DTSTAMP:20260430T073233
CREATED:20230324T193043Z
LAST-MODIFIED:20230505T163451Z
UID:58698-1692921600-1693094399@creatineinfo.org
SUMMARY:2023 CCDS Virtual Conference - Main Sessions
DESCRIPTION:Association for Creatine Deficiencies invites you to attend the 2023 Cerebral Creatine Deficiency Syndromes (CCDS) Virtual Conference. The goal of this meeting is to share the latest CCDS research and advancements. \nVisit the conference page and register today by clicking here!
URL:https://creatineinfo.org/event/2023-ccds-virtual-conference-main/
CATEGORIES:Symposium
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230818T130000
DTEND;TZID=America/Denver:20230818T160000
DTSTAMP:20260430T073233
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;TZID=America/New_York:20230728T120000
DTEND;TZID=America/New_York:20230728T131500
DTSTAMP:20260430T073233
CREATED:20230719T174632Z
LAST-MODIFIED:20230719T182810Z
UID:59110-1690545600-1690550100@creatineinfo.org
SUMMARY:GAMT Webinar
DESCRIPTION:GAMT Webinar Announcement
URL:https://creatineinfo.org/event/gamt-webinar/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230708T120000
DTEND;TZID=America/New_York:20230708T150000
DTSTAMP:20260430T073233
CREATED:20230615T031923Z
LAST-MODIFIED:20230620T201748Z
UID:59050-1688817600-1688828400@creatineinfo.org
SUMMARY:Sibshops 7/8
DESCRIPTION:Learn more and register here.
URL:https://creatineinfo.org/event/sibshops-7-8/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230624T120000
DTEND;TZID=America/New_York:20230624T150000
DTSTAMP:20260430T073233
CREATED:20230615T033232Z
LAST-MODIFIED:20230615T033232Z
UID:59053-1687608000-1687618800@creatineinfo.org
SUMMARY:Sibshops 10/7
DESCRIPTION:Learn more and register here.
URL:https://creatineinfo.org/event/sibshops-10-7/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230610
DTEND;VALUE=DATE:20230611
DTSTAMP:20260430T073233
CREATED:20230205T001250Z
LAST-MODIFIED:20230324T192925Z
UID:58297-1686355200-1686441599@creatineinfo.org
SUMMARY:Walk for Strength 2023
DESCRIPTION:Visit creatineinfo.org/walk to learn more!
URL:https://creatineinfo.org/event/wfs-2023/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230602T120000
DTEND;TZID=America/New_York:20230602T133000
DTSTAMP:20260430T073233
CREATED:20230205T000415Z
LAST-MODIFIED:20230205T002644Z
UID:58295-1685707200-1685712600@creatineinfo.org
SUMMARY:CCDS Expert Panel Community Webinar
DESCRIPTION:[vc_row][vc_column][vc_column_text] \n \nLearn more and register for the webinar series here. \n[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/ccds-expert-panel-community-webinar-2-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20230330T120000
DTEND;TZID=America/Los_Angeles:20230330T123000
DTSTAMP:20260430T073233
CREATED:20230324T192715Z
LAST-MODIFIED:20230324T192715Z
UID:58695-1680177600-1680179400@creatineinfo.org
SUMMARY:Community Update Webinar
DESCRIPTION:Join us on March 30 at 12 noon Pacific for a 30-minute community update and hear from ACD Executive Director Heidi Wallis as she shares about the Creatine Deficiency Research Center and other exciting initiatives for 2023! Sign up today. This will be recorded and made available afterwards! \nSign up here. After registering\, you will receive a confirmation email containing information about joining the webinar.
URL:https://creatineinfo.org/event/community-update-webinar/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260430T073233
CREATED:20230204T235114Z
LAST-MODIFIED:20230204T235229Z
UID:58289-1677542400-1677628799@creatineinfo.org
SUMMARY:Rare Disease Day 2023
DESCRIPTION:
URL:https://creatineinfo.org/event/rare-disease-day-2023/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230225T120000
DTEND;TZID=America/New_York:20230225T150000
DTSTAMP:20260430T073233
CREATED:20230204T235906Z
LAST-MODIFIED:20230205T002532Z
UID:58293-1677326400-1677337200@creatineinfo.org
SUMMARY:CCDS Sibshops
DESCRIPTION:Calling all CCDS siblings! We’re excited to announce that ACD is partnering with Sibshops to provide a space for siblings to connect and receive peer support in a fun environment. Sign up today! https://creatineinfo.org/sibshops/  \nUPCOMING SESSIONS\nSaturday\, February 25th\nSaturday\, April 8th \nEach date will have three times:\n12:00-12:45 ET youngest group (ages 5-7)\n1:00-2:00 ET middle group (ages 8-12)\n2:00-3:00 ET oldest group (ages 13+)
URL:https://creatineinfo.org/event/ccds-sibshops-2-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230201T130000
DTEND;TZID=America/Denver:20230201T140000
DTSTAMP:20260430T073233
CREATED:20221031T023242Z
LAST-MODIFIED:20221031T023242Z
UID:57976-1675256400-1675260000@creatineinfo.org
SUMMARY:CCDS Expert Panel Community Webinar
DESCRIPTION:[vc_row][vc_column][vc_column_text] \n \nLearn more and register for the webinar series here. \n[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/ccds-expert-panel-community-webinar-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230201T080000
DTEND;TZID=America/Denver:20230201T170000
DTSTAMP:20260430T073233
CREATED:20230109T171812Z
LAST-MODIFIED:20230120T024428Z
UID:58166-1675238400-1675270800@creatineinfo.org
SUMMARY:CCDS Day 2023
DESCRIPTION:Learn how you can participate in the #CCDSDay2023 campaign here.
URL:https://creatineinfo.org/event/ccds-day-2023-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230124T080000
DTEND;TZID=America/Denver:20230124T131500
DTSTAMP:20260430T073233
CREATED:20220811T192716Z
LAST-MODIFIED:20221129T214852Z
UID:57466-1674547200-1674566100@creatineinfo.org
SUMMARY:Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Cerebral Creatine Deficiency Syndromes (CCDS)
DESCRIPTION:Learn more and register here.
URL:https://creatineinfo.org/event/el-pfdd-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230114T120000
DTEND;TZID=America/Denver:20230114T160000
DTSTAMP:20260430T073233
CREATED:20220527T032750Z
LAST-MODIFIED:20221128T212946Z
UID:54409-1673697600-1673712000@creatineinfo.org
SUMMARY:CCDS Sibshops
DESCRIPTION:Calling all CCDS siblings! We’re excited to announce that ACD is partnering with Sibshops to provide a space for siblings to connect and receive peer support in a fun environment. Sign up today! https://creatineinfo.org/sibshops/  \nUPCOMING SESSIONS\nSaturday\, January 14th\nSaturday\, February 25th\nSaturday\, April 8th \nEach date will have three times:\n2:00-2:45 ET youngest group\n3:00-4:00 ET middle group\n4:00-5:00 ET oldest group
URL:https://creatineinfo.org/event/ccds-sibshops-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221208T143000
DTEND;TZID=America/New_York:20221208T153000
DTSTAMP:20260430T073233
CREATED:20220915T205605Z
LAST-MODIFIED:20221128T212554Z
UID:57611-1670509800-1670513400@creatineinfo.org
SUMMARY:EL-PFDD Introductory Webinar
DESCRIPTION:Join us on Dec 8\, 2022 at 2:30 PM ET for an introductory webinar aimed at providing an overview of EL-PFDD meetings\, including more about the format\, purpose\, and goals of the January 2023 CCDS EL-PFDD. \nLearn more and register here.
URL:https://creatineinfo.org/event/el-pfdd-introductory-webinar-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20221129T080000
DTEND;TZID=America/Denver:20221231T170000
DTSTAMP:20260430T073233
CREATED:20220811T192531Z
LAST-MODIFIED:20221109T195350Z
UID:57463-1669708800-1672506000@creatineinfo.org
SUMMARY:Holiday Heroes 2022
DESCRIPTION:[vc_row][vc_column][vc_column_text] \nHoliday Heroes 2022 is here!\nLearn more about this year’s campaign goals and how you can participate here.[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/holiday-heroes-2022/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20221101T130000
DTEND;TZID=America/Denver:20221101T140000
DTSTAMP:20260430T073233
CREATED:20220811T193316Z
LAST-MODIFIED:20220911T042143Z
UID:57468-1667307600-1667311200@creatineinfo.org
SUMMARY:CCDS Expert Panel Community Webinar
DESCRIPTION:[vc_row][vc_column][vc_column_text] \n \nLearn more and register for the webinar series here. \n[/vc_column_text][/vc_column][/vc_row]
URL:https://creatineinfo.org/event/ccds-expert-panel-community-webinar/
END:VEVENT
END:VCALENDAR