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X-WR-CALDESC:Events for Association for Creatine Deficiencies
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20180701
DTEND;VALUE=DATE:20180702
DTSTAMP:20260430T140458
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:20260430T140458
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:20260430T140458
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:20171004
DTEND;VALUE=DATE:20171007
DTSTAMP:20260430T140458
CREATED:20180124T050530Z
LAST-MODIFIED:20180916T190947Z
UID:4540-1507075200-1507334399@creatineinfo.org
SUMMARY:Children's Neurology Society Meeting 2017
DESCRIPTION:Children’s Neurology Society Meeting 2017\nKansas City\, MO\nOctober 4-6\, 2017\n\nAt this meeting\, we were able to speak to many children’s neurologists about the need for early diagnosis of CCDS. We were also able to answer their questions thanks to information from a survey completed by CCDS families.
URL:https://creatineinfo.org/event/childrens-neurology-society-meeting-2017/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170930
DTEND;VALUE=DATE:20171001
DTSTAMP:20260430T140458
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:20260430T140458
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:20170422
DTEND;VALUE=DATE:20170424
DTSTAMP:20260430T140458
CREATED:20180124T050406Z
LAST-MODIFIED:20180124T050406Z
UID:4538-1492819200-1492991999@creatineinfo.org
SUMMARY:MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration
DESCRIPTION:MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration\, April 22-23\, 2017
URL:https://creatineinfo.org/event/medx-stanford-university-abstract-presentation-benefitting-the-rare-disease-community-through-collaboration/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170322
DTEND;VALUE=DATE:20170325
DTSTAMP:20260430T140458
CREATED:20180124T050705Z
LAST-MODIFIED:20180124T050705Z
UID:4544-1490140800-1490399999@creatineinfo.org
SUMMARY:American College of Medical Genetics Conference 2017
DESCRIPTION:American College of Medical Genetics Conference 2017\nPhoenix\, AZ\nMarch 22-24\, 2017\nThe 2017 ACMG conference in Phoenix\, Arizona was well attended by geneticists from all over the world as well as other allied health care members. The ACD was privileged to speak with hundreds of attendees that visited their booth\, including Dr. Simona Bianconi from the NIH. Dr. Bianconi has a current publication in the Rare Neurological Disease Special Report on Creatine Transporter Deficiency Disorder. The publication can be viewed here on page 51. \n Dr. Simona Bianconi and Linda Cooper\nDr. Judy Miller from Children’s Hospital of Philadelphia was in attendance and presented her research findings in the poster “Early Warning Signs and Clinical Endpoints for Creatine Transpoter Deficiency”\, raising even more awareness of CCDS in the genetics community. \n Dr. Judy Miller\nACD Ambassador and pediatric genetic counselor\, Laura Martin\, attended ACMG and helped staff the booth and answer questions. \n Kim Tuminello and Laura Martin
URL:https://creatineinfo.org/event/american-college-of-medical-genetics-conference-2017/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170201
DTEND;VALUE=DATE:20170202
DTSTAMP:20260430T140458
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:20161205
DTEND;VALUE=DATE:20161207
DTSTAMP:20260430T140458
CREATED:20180124T050837Z
LAST-MODIFIED:20180124T050837Z
UID:4548-1480896000-1481068799@creatineinfo.org
SUMMARY:CTD Workshop
DESCRIPTION:CTD Workshop\nParis\, France\nDecember 5 – 6\, 2016\n\nThe ACD was honored to attend the CTD workshop\, organized by Dr. Aurore Curie\, Dr. Vincent des Portes and representatives of DeficSience and Xtraordinaire. For two days\, CTD held center stage. Discussions focused on the disease itself\, importance of collecting natural history data\, potential intervention therapies\, and the need for clinical trials. The call for a CTD treatment is getting louder. With data provided by our patient community\, we were able to share the patient perspective relating to natural history outcomes and feelings surrounding clinical trials. The ACD’s CTD Presentation can be viewed here.
URL:https://creatineinfo.org/event/ctd-workshop/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161026
DTEND;VALUE=DATE:20161030
DTSTAMP:20260430T140458
CREATED:20180124T050922Z
LAST-MODIFIED:20180124T050922Z
UID:4550-1477440000-1477785599@creatineinfo.org
SUMMARY:Exhibit at the Child Neurology Society (CNS) Annual Meeting 2016
DESCRIPTION:Exhibit at the Child Neurology Society (CNS) Annual Meeting 2016\nVancouver\, BC\nOctober 26 – 29\, 2016 \nThe Child Neurology Society (CNS) 2016 meeting was an excellent opportunity to collaborate with industry\, clinicians\, and patient advocates. ACD’s attendees discussed the importance of continued education around neurodevelopmental disorders and we were honored with the opportunity to attend the Child Neurology Foundation’s CAB meeting\, comprised of a diverse group of innovators interested in changing the future of medicine. The voice of the patient advocate groups are resonating with both industry and clinicians\, and it is becoming very apparent that success will depend on bringing these three groups together to help improve the diagnostic process\, as well as the future of research and drug development. \n ACD\, CNF\, and Lumos
URL:https://creatineinfo.org/event/exhibit-at-the-child-neurology-society-cns-annual-meeting-2016/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161017
DTEND;VALUE=DATE:20161019
DTSTAMP:20260430T140458
CREATED:20180124T051003Z
LAST-MODIFIED:20180124T051003Z
UID:4552-1476662400-1476835199@creatineinfo.org
SUMMARY:Attendance at National Organization for Rare Diseases (NORD)
DESCRIPTION:Attendance at National Organization for Rare Diseases (NORD)\nWashington\, DC\nOctober 17-18\, 2016
URL:https://creatineinfo.org/event/attendance-at-national-organization-for-rare-diseases-nord/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160922
DTEND;VALUE=DATE:20160925
DTSTAMP:20260430T140458
CREATED:20180124T051052Z
LAST-MODIFIED:20180124T051052Z
UID:4554-1474502400-1474761599@creatineinfo.org
SUMMARY:Attendance at Global Genes Rare Patient Advocacy Summit
DESCRIPTION:Attendance at Global Genes Rare Patient Advocacy Summit\nHuntington Beach\, CA\nSeptember 22 – 24\, 2016 \nGlobal Genes is the leading rare disease advocacy organization with global reach to the worldwide community of rare disease patients\, caregivers\, advocates\, and clinical partners. This conference was the 3rd year that the ACD had attended in Huntington Beach\, CA.  Each year the ACD has had the privilege of listening to some of the most well respected medical professionals in the country.   This year was no exception.  We had the opportunity to hear about innovation such as  3D tissue generation.   No\, they can’t make a new liver or heart\, yet…but they are working on it.  We heard from the NIH and how they are working on trying to house a patient registry that brings different research partners together\, and more importantly\, the advocacy information.  Collaboration is the key\, and without it\, a cure for a rare disease moves slower or not at all.  The Global Genes Summit reminds us that we\, as a rare disease community\, are strongest working together. \n Linda Cooper and Kim Tuminello\n Carol Dutch\, Ed O’Neill\, Linda Cooper\, and Bob Cooper\n Taylor Hicks\, Linda Cooper\, and Bob Cooper
URL:https://creatineinfo.org/event/attendance-at-global-genes-rare-patient-advocacy-summit/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160917
DTEND;VALUE=DATE:20160920
DTSTAMP:20260430T140458
CREATED:20180124T051138Z
LAST-MODIFIED:20180124T051138Z
UID:4556-1474070400-1474329599@creatineinfo.org
SUMMARY:Exhibit at the Society for Developmental and Behavioral Pediatrics (SDBP)
DESCRIPTION:Exhibit at the Society for Developmental and Behavioral Pediatrics (SDBP)\nSavannah\, Georgia\nSeptember 17 – 19\, 2016 \n Tony Parker and Melissa Parker
URL:https://creatineinfo.org/event/exhibit-at-the-society-for-developmental-and-behavioral-pediatrics-sdbp/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160913
DTEND;VALUE=DATE:20160915
DTSTAMP:20260430T140458
CREATED:20180124T051225Z
LAST-MODIFIED:20180124T051225Z
UID:4558-1473724800-1473897599@creatineinfo.org
SUMMARY:(NINDS) National Institute of Neurological Disorders and Stroke Nonprofit Forum
DESCRIPTION:(NINDS) National Institute of Neurological Disorders and Stroke Nonprofit Forum\nBethesda\, Maryland\nSeptember 13 – 14\, 2016 \n 
URL:https://creatineinfo.org/event/ninds-national-institute-of-neurological-disorders-and-stroke-nonprofit-forum/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160402
DTEND;VALUE=DATE:20160403
DTSTAMP:20260430T140458
CREATED:20180124T051302Z
LAST-MODIFIED:20180124T051302Z
UID:4560-1459555200-1459641599@creatineinfo.org
SUMMARY:Exhibit at Autism Speaks Walk: Los Angeles
DESCRIPTION:Exhibit at Autism Speaks Walk: Los Angeles\nPasadena\, California\nApril 2\, 2016 \nThousands attended the Walk Now for Autism Speaks event at the Rose Bowl in Pasadena\, California. \nOpening ceremonies for the 14th annual 5K event kicked off at 9 a.m. The walk benefited autism research and programs to raise awareness. \nWith a very high percentage of CCDS patients being diagnosed with an Autism Spectrum Disorder early on in their diagnosis journey\, it is important for us to reach this community and the Autism Speaks walk is a good way to do it. \nKim Tuminello\, her daughter Paige\, and Evelyn and Efrin De Jesus all attended on behalf of ACD. They passed out brochures on CCDS and how to test for them\, played games\, and interacted with a community that is still searching for answers. \n 
URL:https://creatineinfo.org/event/exhibit-at-autism-speaks-walk-los-angeles/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160308
DTEND;VALUE=DATE:20160313
DTSTAMP:20260430T140458
CREATED:20180124T051347Z
LAST-MODIFIED:20180124T051347Z
UID:4562-1457395200-1457827199@creatineinfo.org
SUMMARY:Exhibit at the 2016 Annual Clinical Genetics (ACMG) Meeting
DESCRIPTION:Exhibit at the 2016 Annual Clinical Genetics (ACMG) Meeting\nTampa\, Florida\nMarch 8 – 12\, 2016 \nWhitnie Strauss\, Kim Tuminello\, and Laura Martin from ACD along with Jodi Keene\, all attended the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting 2016 at the Tampa Convention Center\, Tampa\, Florida.  The targeted audience for this medical event is for medical and clinical geneticists\, genetic counselors\, pediatric\, obstetric\, and maternal-fetal specialists. \nThe ACMG meeting provides genetics professionals with the opportunity to learn how genetics and genomics are being integrated into medical or clinical practice. The ACMG Annual Meeting Program Committee has developed a high caliber\, a scientific program that presents the latest developments and research in clinical genetics and genomics.
URL:https://creatineinfo.org/event/exhibit-at-the-2016-annual-clinical-genetics-acmg-meeting/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160220
DTEND;VALUE=DATE:20160221
DTSTAMP:20260430T140458
CREATED:20180124T051432Z
LAST-MODIFIED:20180124T051432Z
UID:4564-1455926400-1456012799@creatineinfo.org
SUMMARY:Exhibit at the "U.R. Our Hope" Rare Disease Day "Cup of Hope" Chili Cook-Off
DESCRIPTION:Exhibit at the “U.R. Our Hope” Rare Disease Day “Cup of Hope” Chili Cook-Off\nKyle\, Texas\nFebruary 20\, 2016 \nThe ACD attended the “U.R. Our Hope” chili cook-off in Kyle\, Texas. It was a great event and raised more awareness of cerebral creatine deficiencies in the community. We even saw some folks from Lumos there. \n Bob Davis\, Aleksandra Bruchey\, and Chris Bemben of Lumos Pharma with Whitnie Strauss of ACD and her sons
URL:https://creatineinfo.org/event/exhibit-at-the-u-r-our-hope-rare-disease-day-cup-of-hope-chili-cook-off/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20151206
DTEND;VALUE=DATE:20151207
DTSTAMP:20260430T140458
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20151007
DTEND;VALUE=DATE:20151011
DTSTAMP:20260430T140458
CREATED:20180124T051615Z
LAST-MODIFIED:20180124T051615Z
UID:4568-1444176000-1444521599@creatineinfo.org
SUMMARY:Exhibit at The 44th Annual Child Neurology Society (CNS) Meeting
DESCRIPTION:Exhibit at The 44th Annual Child Neurology Society (CNS) Meeting\n \nCNS Annual Meeting\nGaylord National (Outside of Washington\, DC)\nOctober 7 – 10\, 2015 \n 
URL:https://creatineinfo.org/event/exhibit-at-the-44th-annual-child-neurology-society-cns-meeting/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20150924
DTEND;VALUE=DATE:20150926
DTSTAMP:20260430T140458
CREATED:20180124T051652Z
LAST-MODIFIED:20180124T051652Z
UID:4571-1443052800-1443225599@creatineinfo.org
SUMMARY:Attendance at Global Genes Rare Patient Advocacy Summit
DESCRIPTION:Attendance at Global Genes Rare Patient Advocacy Summit\n \nGlobal Genes Summit\nHuntington Beach\, California\nSeptember 24 – 25\, 2015 \n 
URL:https://creatineinfo.org/event/attendance-at-global-genes-rare-patient-advocacy-summit-2/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20150324
DTEND;VALUE=DATE:20150329
DTSTAMP:20260430T140458
CREATED:20180124T051726Z
LAST-MODIFIED:20180124T051726Z
UID:4573-1427155200-1427587199@creatineinfo.org
SUMMARY:Exhibit at The 2015 ACMG Conference
DESCRIPTION:Exhibit at The 2015 ACMG Conference\n2015 ACMG Conference\nSalt Lake City\, Utah\nMarch 24 – 28\, 2015
URL:https://creatineinfo.org/event/exhibit-at-the-2015-acmg-conference/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20150227
DTEND;VALUE=DATE:20150228
DTSTAMP:20260430T140458
CREATED:20180124T051808Z
LAST-MODIFIED:20180124T051808Z
UID:4575-1424995200-1425081599@creatineinfo.org
SUMMARY:The Pediatric Grand Rounds Rare Disease Day Event
DESCRIPTION:The Pediatric Grand Rounds Rare Disease Day Event\nFebruary 27\, 2015\nKim Tuminello\, ACD President Presented
URL:https://creatineinfo.org/event/the-pediatric-grand-rounds-rare-disease-day-event/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20141022
DTEND;VALUE=DATE:20141026
DTSTAMP:20260430T140458
CREATED:20180124T051906Z
LAST-MODIFIED:20180124T051906Z
UID:4577-1413936000-1414281599@creatineinfo.org
SUMMARY:Exhibit at the 43rd Child Neurology Society (CNS) Meeting
DESCRIPTION:Exhibit at the 43rd Child Neurology Society (CNS) Meeting\nColumbus\, Ohio\nOctober 22 – 25\, 2014 \nThe ACD was thrilled to exhibit at the Child Neurology Society 2014 Meeting. All five ACD Board Members were in attendance. \nThe CNS Scientific Meeting is designed by\, and is primarily intended for\, child neurologists and professionals in fields of study related to neurologic and developmental disorders in children and adolescents. As a result of attending this meeting\, the physicians will be better able to care for children with neurological disease through an understanding of recent advances in neuroscience\, neurodiagnostics and therapeutics relevant to child neurology. \nThe ACD Exhibit booth was very busy with attendees. We were able to educate and advocate for CCDS screening. All attendees that stopped by the booth had an interest in CCDS screening and lab information. We are in hopes that we can make this meeting annually. \n Melissa Parker\, Missy Klor\, Linda Cooper\, Whitnie Strauss\, and Kim Tuminello
URL:https://creatineinfo.org/event/exhibit-at-the-43rd-child-neurology-society-cns-meeting/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20140901
DTEND;VALUE=DATE:20140902
DTSTAMP:20260430T140458
CREATED:20180124T051948Z
LAST-MODIFIED:20180124T051948Z
UID:4579-1409529600-1409615999@creatineinfo.org
SUMMARY:Attendance at the Global Genes Rare Patient Advocacy 2014 Summit
DESCRIPTION:Attendance at the Global Genes Rare Patient Advocacy 2014 Summit\nHuntington Beach\, California\nSeptember 2014 \nThe ACD attended the 2014 Global Genes Allies and Rare Disease Advocacy Summit\, in Huntington Beach\, California. At this year’s event\, the ACD left with helpful information and new contacts. We attended workshops to learn more about Patient Registries\, Grant Writing\, and Fundraising. This was Global Gene’s 3rd Annual Summit and was host to over 350 attendees and over 1\,000 participated via webcam. To see more\, go to www.globalgenes.org.
URL:https://creatineinfo.org/event/attendance-at-the-global-genes-rare-patient-advocacy-2014-summit/
CATEGORIES:Exhibits & Workshops
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20130612
DTEND;VALUE=DATE:20130616
DTSTAMP:20260430T140458
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. \n Look 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