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X-WR-CALNAME:CdLS Foundation
X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20170101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20181208
DTEND;VALUE=DATE:20181209
DTSTAMP:20260405T231341
CREATED:20181026T001957Z
LAST-MODIFIED:20181026T001957Z
UID:1607-1544227200-1544313599@www.cdlsusa.org
SUMMARY:One Love\, One Heart 5K
DESCRIPTION:On December 8\, Jim and Jen Pomfret will mark the twelfth year of what is called the “hottest 5K of December”. As the One Love\, One Heart 5k slogan reads\, “One love refers to the universal love and respect expressed by all people for all people.” At the event\, this love is directed towards those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). This includes their daughter\, Maya. \n$25 Pre Registration by November 24\, 2018 \n$30 Late and Race Day Registration \nRain or Shine (or snow) \nWhen: 10:00 a.m. to 1 p.m.Where: Medlock Park\, Decatur\, GARunner\, walkers\, wheelchairs\, and strollers welcome. \nPACKET PICK UP & RACE DAY REGISTRATION\nRace Day Registration and Packet pick up starting at 8:45 am at the Pavilion at Medlock Park – 874 Gaylemont Circle\, Decatur\, 30033 \nDelicious refreshments will be available \nGreat playground for kids to play \nGuaranteed long sleeve t-shirts for all pre-registered runners; while supplies last for race day registration \nGift Card Awards: Overall male and female\, overall masters male and female\, top male and female in each age group \nPARKING\nParking is available in the paved parking lot on Scott Circle side of Medlock Park.
URL:https://www.cdlsusa.org/event/one-love-one-heart-5k/
LOCATION:Medlock Park\, Decatur\, GA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20181110T170000
DTEND;TZID=UTC:20181110T203000
DTSTAMP:20260405T231341
CREATED:20181024T185801Z
LAST-MODIFIED:20181024T185801Z
UID:1519-1541869200-1541881800@www.cdlsusa.org
SUMMARY:9th Annual Brew & BBQ
DESCRIPTION:On Saturday\, November 10th from 5:00 – 8:30 pm\, at Currahee Brewing Co. in Alpharetta\, GA the 9th Annual Brew & BBQ to benefit the CdLS Foundation will be held. Last year\, the event raised a net of $9\,000\, the highest total to date. Over the last eight years the event has raised over $39\,000 for the Foundation. \nFran Rissland\, mother of son Riley\, and former CdLS Foundation Board of Directors member\, is the organizer of this event. This year’s event features an extended BBQ buffet\, live music and a chance to bid on many silent auction items\, including hotel stays\, a golf foursome\, restaurants and much more!
URL:https://www.cdlsusa.org/event/9th-annual-brew-bbq/
LOCATION:Currahee Brewing Co.\, 25 S Main St\, Alpharetta\, GA\, 30009\, United States
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20181109
DTEND;VALUE=DATE:20181111
DTSTAMP:20260405T231341
CREATED:20181022T191558Z
LAST-MODIFIED:20181022T191558Z
UID:1316-1541721600-1541894399@www.cdlsusa.org
SUMMARY:Board of Directors Meeting
DESCRIPTION:
URL:https://www.cdlsusa.org/event/board-of-directors-meeting/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20181104
DTEND;VALUE=DATE:20181105
DTSTAMP:20260405T231341
CREATED:20181022T191057Z
LAST-MODIFIED:20181022T191057Z
UID:1310-1541289600-1541375999@www.cdlsusa.org
SUMMARY:TCS New York City Marathon
DESCRIPTION:A smile from a child with CdLS inspires Team CdLS runners to turn their love of the sport into a passion to help raise funds for the hundreds of individuals that have this little- known syndrome. There is no cure. \nAs a Team CdLS member\, you are provided a guaranteed entry into the TCS New York City Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $2\,500 for individuals with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nTeam CdLS amenities include: \n• Guaranteed race entry\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized Web page through CrowdRise.com\n• Dedicated staff to provide guidance and Team CdLS branded materials\n• Team CdLS singlet\n• Pre-Race Luncheon\n• Race day support\n• Team CdLS swag bag\n• The satisfaction that you have helped individuals with CdLS and their families \nTo register for the TCS New York City Marathon as a Team CdLS runner\, email Kristi or call 800-753-2357. Team CdLS also welcomes runners who entered through the lottery or otherwise qualified. \n2018 TCS New York City Marathon Processing and Entry Fees: \n• U.S. residents (those who live in the 50 United States or the District of Columbia)\n• NYRR members: US $255\n• Non-members: US $295\n• Non-U.S. residents (including Puerto Rico and other U.S. territories): US $358 \nEntry fees will be charged upon acceptance. Once you have been accepted\, your entry fees are non-transferable under any and all circumstances\, and are also non-refundable under any and all circumstances except in the event of cancellation of the marathon. \nIncluded in the entry fee\, provided by the 2018 TCS New York City Marathon: \n• Entry to the 2018 TCS New York City Marathon (including fluid/fueling stations\, medical support\, entertainment\, bag-check handling\,* security\, and more)\n• Runner “goody bag” including official New Balance technical shirt and official TCS New York City Marathon Program magazine.\n• Official transportation to the start from Midtown Manhattan\, Lower Manhattan\, or the Meadowlands Sports Complex (New Jersey)**\n• Start festival\, including breakfast and entertainment.\n• Finisher materials: medal\, food\, beverages\, Heatsheet™\, official results magazine \nRegistration Dates:\nGuaranteed Entry: January 15 – February 15\, 2018 (Entry notification announced on March 2) Team CdLS: February 28\, 2017
URL:https://www.cdlsusa.org/event/tcs-new-york-city-marathon/
LOCATION:New York City
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20181103
DTEND;VALUE=DATE:20181104
DTSTAMP:20260405T231341
CREATED:20181022T040003Z
LAST-MODIFIED:20181022T191232Z
UID:539-1541203200-1541289599@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for Adolescents and Adults
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Clinics occur each spring and fall and can accommodate up to eight individuals. A Family Service Coordinator from the Foundation always attends to provide support. \nParticipants receive one-to-one consultations with specialists from pediatric ophthalmology\, gynecology\, pediatric dentistry\, genetics\, gastroenterology and nutrition\, psychiatry and behavioral psychology.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
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