BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Association for Creatine Deficiencies - ECPv4.9.14//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Association for Creatine Deficiencies X-ORIGINAL-URL:https://creatineinfo.org X-WR-CALDESC:Events for Association for Creatine Deficiencies BEGIN:VTIMEZONE TZID:America/Denver BEGIN:DAYLIGHT TZOFFSETFROM:-0700 TZOFFSETTO:-0600 TZNAME:MDT DTSTART:20210314T090000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0600 TZOFFSETTO:-0700 TZNAME:MST DTSTART:20211107T080000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;VALUE=DATE:20210201 DTEND;VALUE=DATE:20210202 DTSTAMP:20210120T015732 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. \n URL:https://creatineinfo.org/event/ccds-day-2021/ CATEGORIES:Community Events END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20210228T080000 DTEND;TZID=America/Denver:20210228T233000 DTSTAMP:20210120T015732 CREATED:20210105T202256Z LAST-MODIFIED:20210105T202825Z 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!  Join the CreatineInfo Registry on February 28th.  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. \n URL:https://creatineinfo.org/event/rare-disease-day-2021/ CATEGORIES:Community Events END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20210228T080000 DTEND;TZID=America/Denver:20210228T233000 DTSTAMP:20210120T015732 CREATED:20210105T202506Z LAST-MODIFIED:20210105T202803Z UID:18437-1614499200-1614555000@creatineinfo.org SUMMARY:CreatineInfo Registry Launch DESCRIPTION:This Rare Disease Day\, your story helps to further research! The ACD\, in partnership with NORD\, is launching a Natural History Study Patient-reported Registry on February 28th. Join the registry and help us further research for a better quality of life for those impacted by Creatine Deficiencies. \n URL:https://creatineinfo.org/event/creatineinfo-registry-launch/ CATEGORIES:Community Events END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20210626T080000 DTEND;TZID=America/Denver:20210629T170000 DTSTAMP:20210120T015732 CREATED:20191115T152951Z LAST-MODIFIED:20200629T185622Z UID:12336-1624694400-1624986000@creatineinfo.org SUMMARY:CCDS Scientific + Patient Symposium 2021 DESCRIPTION:[vc_row][vc_column][vc_column_text] \n2020 Symposium Rescheduled\n[/vc_column_text][vc_column_text]The ACD has been closely monitoring the spread of COVID-19 and working with our scientific medical advisors\, in addition to following recommendations from the Centers for Disease Control (CDC) and World Health Organization (WHO)\, on precautions surrounding travel and large events. After careful consideration and at the advice of our scientific advisors\, the ACD has decided in the best interest and health of all parties\, to postpone the 2020 Scientific + Patient Symposium. We are saddened to have to come to this decision. Through careful planning and collaboration with the Grand Summit\, Park City we are grateful to be able to reschedule our conference for June 26 – 29\, 2021 (Tentative). \nWill 2020 registrations roll over to 2021?\nNo. The ACD will be suspending the 2020 conference registration site and issuing refunds for all 2020 registrations to date. We will launch a new registration page for the 2021 conference in the coming months. \nHow will I know if I’ve been issued a refund for my 2020 Conference registration(s)?\nIf you have completed a 2020 conference registration\, an ACD representative will be following up with you directly over the next week to issue a refund for your registration payment(s). \nWhat do I need to do about my hotel reservation?\nThe Grand Summit\, Park City will be canceling all existing hotel reservations. If you have not received a cancellation confirmation email\, please contact the hotel directly to cancel your room(s). Reservations for 2021 will need to be booked at a later date. \nAre there any alternative plans for a meeting in 2020?\nWe understand that there is a lot of momentum and information to share! The ACD is currently exploring options to host a two-day virtual event to take place this summer. We will be sending out more details and registration information for this remote option as they become available.[/vc_column_text][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1585678123003{background-color: #0d2947 !important;}”][vc_column][vc_single_image image=”7355″ img_size=”400×80″ alignment=”center”][vc_column_text]This conference is intended for members of the scientific and medical community\, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient and family community. Professionals will learn from families and patients while also presenting their experience and knowledge of GAMT\, CTD\, and AGAT disorders\, allowing for a deeper understanding of CCDS in the medical community and helping pave the way for innovation through collaboration.[/vc_column_text][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1516844349382{padding-top: 32px !important;padding-bottom: 32px !important;background-color: #f97c28 !important;}”][vc_column][vc_column_text] \nProgram\n[/vc_column_text][vc_row_inner css=”.vc_custom_1517011692173{margin-right: 32px !important;}”][vc_column_inner width=”1/4″][vc_column_text]Thursday\, July 30\, 2020 \nCheck-In\, Badge Pick Up & hors d’oeuvres 6:30pm – 8:00 pm | Kokopelli Lobby[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/4″][vc_column_text]Friday\, July 31\, 2020 \nPresentations 8:45am – 4:45pm | Kokopelli Ballrooms I & II \nBuffet Dinner and Fun 6:30pm – 9:00pm[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/4″][vc_column_text]Saturday\, August 1\, 2020 \nPresentations 8:45am – 4:45pm | Kokopelli Ballrooms I & II \nClosing Banquet & Awards Ceremony 6:30pm[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/4″][vc_column_text]Sunday\, August 2\, 2020 \nFamily Breakfast in the hotel 8:30am \nCCDS Family pool time and farewells 10:00am-1:00pm[/vc_column_text][/vc_column_inner][/vc_row_inner][vc_btn title=”See the 2018 Schedule” color=”white” align=”left” css_animation=”slideInLeft” link=”url:https%3A%2F%2Fcreatineinfo.org%2Fwp-content%2Fuploads%2F2018%2F07%2FFull-Agenda-1.pdf|||”][/vc_column][/vc_row][vc_row full_width=”stretch_row” parallax=”content-moving” parallax_image=”6892″][vc_column][vc_column_text] \nVenue\n[/vc_column_text][vc_row_inner][vc_column_inner width=”1/2″ css=”.vc_custom_1516496618594{padding-left: 10px !important;background-color: rgba(10\,10\,10\,0.5) !important;*background-color: rgb(10\,10\,10) !important;}”][vc_column_text css_animation=”fadeInLeft”] \nThe Grand Summit Hotel\n[/vc_column_text][vc_icon icon_fontawesome=”fa fa-map-o” color=”custom” css_animation=”fadeInLeft” custom_color=”#f97c28″][vc_column_text css_animation=”fadeInLeft”]Address: 4000 Canyons Resort Drive\, Park City\, UT\nPhone: (888) 416-6195\nGroup ID: CY0ACD2\nGroup Name: Association for Creatine Deficiencies\nReservations specialists will be able to assist you through the reservations process at the number above. \n*June 30\, 2020 is the last day to make a reservation at the group rate. Please reserve your room as soon as possible due to the group block of rooms being limited in number.\n**The full room balance is due upon check-in. Any changes or cancellations to your booking must be made 7 days prior to your arrival date.[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/2″ css=”.vc_custom_1516498301955{background-color: rgba(0\,0\,0\,0.5) !important;*background-color: rgb(0\,0\,0) !important;}”][vc_column_text css_animation=”fadeInRight” css=”.vc_custom_1558891665123{padding-top: 24px !important;}”]Grand Summit Hotel is located on Park City Mountain Resort in the Canyons Village base\, which is 4 miles from the Park City base\, 5 miles from the Utah Olympic Park\, and just over 30 minutes drive from the Salt Lake City International Airport. Hotel accommodations include free parking and a shuttle to Park City Main Street destinations. \nSymposium Room Rates: \n\nStandard Room: $170 + $20 resort fee/night\, available the nights of July 27 – August 3.\nACD room subsidy available to CCDS families. Only applies to the evening of July 30\, 31\, and August 1. Contact ACD for details.\nRooms at this rate are limited. Please reserve yours today!\n\nUpgraded Rooms Available:\n1 bedroom suite $238 +$20 resort fee/night\n2 bedroom suite $369 +$20 resort fee/night \nEmail Andrea@creatineinfo.org for more information.[/vc_column_text][vc_empty_space height=”77px”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_column_text] \nSponsors\nSymposium Sponsors will be announced in the coming months. Contact Andrea@creatineinfo.org for sponsorship information.[/vc_column_text][/vc_column][/vc_row][vc_row full_width=”stretch_row”][vc_column][vc_row_inner content_placement=”middle” disable_element=”yes”][vc_column_inner width=”1/3″][vc_single_image image=”4603″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” css_animation=”none” link=”http://screencreatine.org”][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”4874″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”http://www.thisbeandnoah.org/travel-grant/”][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”4883″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://sema4genomics.com/”][/vc_column_inner][vc_column_inner width=”1/3″][/vc_column_inner][vc_column_inner width=”1/3″][/vc_column_inner][vc_column_inner width=”1/3″][/vc_column_inner][vc_column_inner width=”1/3″][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][/vc_row_inner][vc_row_inner content_placement=”middle” css=”.vc_custom_1578450780732{padding-top: 0px !important;}”][vc_column_inner width=”1/6″][/vc_column_inner][vc_column_inner width=”1/3″][vc_btn title=”Sponsorship Packages” style=”classic” size=”lg” align=”center” link=”url:https%3A%2F%2Fcreatineinfo.org%2Fwp-content%2Fuploads%2F2020%2F01%2F2020sponsorship-finalb.pdf||target:%20_blank|” css=”.vc_custom_1578450685467{padding-top: 0px !important;}” el_class=”ow-btn”][/vc_column_inner][vc_column_inner width=”1/3″][vc_btn title=”Contact Us Today!” style=”classic” size=”lg” align=”center” link=”url:mailto%3Ainfo%40creatineinfo.org||target:%20_blank|”][/vc_column_inner][vc_column_inner width=”1/6″][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_separator][/vc_column][/vc_row][vc_row][vc_column][vc_column_text] \nCollaborative Partners\n[/vc_column_text][vc_row_inner content_placement=”middle”][vc_column_inner width=”1/2″][vc_single_image image=”3923″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” css_animation=”none” link=”https://www.thinkgenetic.com/”][/vc_column_inner][vc_column_inner width=”1/2″][vc_single_image image=”3224″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”http://www.childneurologyfoundation.org/”][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”2742″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://everylifefoundation.org/”][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”36″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://rarediseases.org/”][/vc_column_inner][vc_column_inner width=”1/3″][vc_single_image image=”37″ img_size=”” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https://globalgenes.org/”][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1516844426978{background-color: #0d2947 !important;}”][vc_column][vc_column_text] \nKids Camp Overview\n[/vc_column_text][vc_separator][vc_single_image image=”14576″ img_size=”400×110″][vc_row_inner][vc_column_inner][vc_column_text] \nHotel Camp Experience\nWe are excited to announce that KidSpark owner and speech pathologist\, Kay Gibbs\, will be organizing and directing our on-site kids’ camp for this year’s symposium. KidSpark\, our camp provider from the 2018 CCDS Symposium in Austin\, is making the trip to Utah to join us! Kids will enjoy our large play space filled with engaging toys\, crafts\, and activities as well as a separate technology space and sensory gym space to help meet the needs of all campers. \nAs a complement to the off-site activities available through the National Ability Center (NAC)\, this in-hotel camp experience will also be available Friday and Saturday during the conference.[/vc_column_text][vc_separator][/vc_column_inner][/vc_row_inner][vc_row_inner content_placement=”middle”][vc_column_inner width=”1/2″][vc_single_image image=”7363″ img_size=”350×130″ add_caption=”yes” alignment=”center” style=”vc_box_outline” onclick=”custom_link” img_link_target=”_blank” css_animation=”none” css=”.vc_custom_1579715086080{background-color: #f7f7f7 !important;}” link=”https://www.discovernac.org/”][/vc_column_inner][vc_column_inner width=”1/2″][/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner][vc_column_text] \nRecreational Experiences for All Ability Levels\nConference attendees age 4 and older are invited to visit the National Ability Center’s ranch in 3 hour long sessions on Friday and Saturday. One-on-one assistance will be available for those who need it. NAC’s campus offers challenges and accommodations for all ability levels. Families signing up for Kids Camp will be contacted directly by NAC to confirm their interest in attending the NAC and which activities their child would be most interested in. \nThe NAC is located 15 minutes from the hotel. Transportation between the hotel and the NAC will be provided by a NAC vehicle operated by their trained staff. The NAC will be at the hotel during Thursday night registration to answer questions\, discuss safety considerations\, and plans for ensuring safety. \n**The ACD will share contact information for any families signing up for Kids Camp with KidSpark in order to enable communication and confirmation of the attendees’ needs.[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][vc_column][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1516844439530{background-color: #f5f5f5 !important;}”][vc_column][vc_column_text] \nConference Registration Is Now Open!\n[/vc_column_text][vc_row_inner][vc_column_inner width=”1/2″][vc_column_text] \nPhysicians\, Researchers\, and Professionals\n[/vc_column_text][vc_column_text] \nThe registration fee for Professionals is $250 per person and includes attendance at all meetings and meals- breakfast Friday through dinner Saturday. \n[/vc_column_text][/vc_column_inner][vc_column_inner width=”1/2″][vc_column_text] \nCCDS Families and Patients\n[/vc_column_text][vc_column_text] \nThe registration fee for Adult CCDS Family Members to attend the conference is $30 each. Registration for Children is $15 each. All meals will be provided with registration- breakfast Friday through breakfast Sunday. There is an additional $25 fee for the Kids Camp. Please reserve your hotel room as soon as possible to ensure availability. The ACD will subsidize $70 per night of CCDS families’ hotel room upon request. Please email andrea@creatineinfo.org for information and to request this subsidy. Subsidy only applies during the three nights of the symposium (July 30\, 31\, and August 1). \n[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row] \n URL:https://creatineinfo.org/event/symposium-2021/ CATEGORIES:Symposium END:VEVENT END:VCALENDAR