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DTSTART;VALUE=DATE:20161007
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UID:728-1475798400-1476057599@www.kcnq2cure.org
SUMMARY:2016 Annual KCNQ2 Cure Summit
DESCRIPTION:Registration is now open for KCNQ2 Cure’s 2016 Family & Professional Summit\, October 7-9 at the Sheraton Hotel\, Silver Springs\, Maryland\n[one_half][/one_half]\n[one_half_last] \n \nPowered by Eventbrite\n\n[/one_half_last]\nThis 3-day event is designed to unite all groups committed to improving the lives of those with KCNQ2 Epilepsy – including families\, caregivers\, clinicians\, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations\, both for families and professionals. \nREGISTRATION FEES\n3-Day Family Summit Registration includes: all sessions\, breakfast and lunch and dinner for Saturday and Sunday and our Saturday evening social event. \nHOTEL INFORMATION\nRooms are available under our room block for $109 + applicable taxes. Rooms may be reserved at this link. \nTRANSPORTATION\n\nRonald Reagan National Airport (DCA): 10.75 miles\, approximately 35 minutes.\nBaltimore Washington International Airport (BWI): 22 miles\, approximately 40 minutes\nDulles International Airport (IAD): 28.6 miles\, approximately 40 minutes (depending on traffic).\n\nSilver Spring Metro Station Information \nThe hotel only four blocks away from the Silver Spring Red Metro line\, offering a convenient transportation option with direct access to Washington\, D. C. Stops on this line include the Smithsonian stop\, only a 30 minute journey away from the hotel. You can reach the Amtrak Union Station in less than 15 minutes\, and also reach Chinatown\, Dupont Circle and the National Zoo by taking this service. \nThe hotel offers a complimentary shuttle that you can utilize to get to and from the Silver Spring Metro station. \nFAMILY SCHOLARSHIP PROGRAM\nOur Family Scholarship Program offers financial assistance to KCNQ2 families to help them afford to attend the KCNQ2 Cure Alliance Summit. Three scholarship levels are available: (1) for registration only or (2) registration plus 3 nights hotel. (3) airfare assistance. Limited funds are available. Additional information and applications for the program can be found at this link. \nSIBLINGS CAMP\nOur Siblings Camp is available for siblings of a child with KCNQ2 epilepsy. Children must be at least 7 years old. The cost for camp includes all activities\, as well as breakfast\, lunch and snacks. \nKCNQ2 CURE ACTIVITY ROOM\nThere will be an onsite activity room available for children with KCNQ2. Childcare will be provided in that room at an additional fee. \nREGISTER TODAY!\n \nPowered by Eventbrite
URL:https://www.kcnq2cure.org/event/2016-annual-kcnq2-cure-summit/
CATEGORIES:Summit
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DTSTART;TZID=Australia/Melbourne:20160316T170000
DTEND;TZID=Australia/Melbourne:20160316T200000
DTSTAMP:20260503T063049
CREATED:20160213T154443Z
LAST-MODIFIED:20190611T165314Z
UID:295-1458147600-1458158400@www.kcnq2cure.org
SUMMARY:New Horizons
DESCRIPTION:Our international foundation is hosting a very special dinner in Melbourne\, Australia on March 16th featuring Alice Bowman of NASA’s New Horizons Mission. We are delighted that New Horizons: The Woman Who Led Us to Pluto will be sponsored by PwC Australia. Proceeds from the night support research for a cure for KCNQ2. \nIt was in July\, 2015 that Alice Bowman gave a ‘thumbs up” beamed around the world.   NASA’s New Horizons spacecraft had successfully completed a daring nine year\, 4.2 billion kilometre journey to Pluto.  Under Bowman’s leadership\, the team had to solve mind-bending technical problems\, including how to fix a last-minute glitch which caused them to lose contact with the satellite just days away from Pluto.  Their successful efforts resulted in breathtaking images which transformed our knowledge of a planet and our solar system.     \nMs Bowman will detail the ingenuity\, skill and teamwork required to lead NASA’s most ambitious effort in a generation.  \nAlice Bowman is the first woman mission operations manager for Johns Hopkins University’s Applied Physics Laboratory\, which designed and operates the spacecraft for NASA.  Nearly fifty percent of those in mission control are women and the team exemplifies diversity.  \nOur event also features Professor Ingrid Scheffer\, Loréal-UNESCO Laureate for Women in Science for the Asia-Pacific and Professor at the University of Melbourne and Florey Institute.  Dr Scheffer will highlight new horizons in the field of genetics including research for those with rare conditions like KCNQ2.   \nI’ll moderate the event\, which celebrates scientific achievement\, women in leadership\, and diversity.  I had the good fortune to attend high school and university with Alice\, who is a wonderful person.  We  will discuss what it takes to turn the impossible into Mission Accomplished.    \nThis event also showcases U.S./Australian collaboration in science.  The efforts of Canberra’s Deep Space Station were integral to the New Horizons mission – a mission which continues to this day. In addition\, Professor Scheffer is on the scientific advisory board of the KCNQ2 Cure Alliance Foundation.
URL:https://www.kcnq2cure.org/event/new-horizons/
CATEGORIES:Fundraiser
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20151113
DTEND;VALUE=DATE:20151114
DTSTAMP:20260503T063049
CREATED:20160212T214545Z
LAST-MODIFIED:20190611T165049Z
UID:279-1447372800-1447459199@www.kcnq2cure.org
SUMMARY:Disney-Pixar – The Good Dinosaur
DESCRIPTION:
URL:https://www.kcnq2cure.org/event/disney-pixar-the-good-dinosaur/
CATEGORIES:Fundraiser
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DTSTART;TZID=America/Denver:20150425T180000
DTEND;TZID=America/Denver:20150425T210000
DTSTAMP:20260503T063049
CREATED:20160213T034439Z
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UID:731-1429984800-1429995600@www.kcnq2cure.org
SUMMARY:Cocktails for a Cure
DESCRIPTION:http://www.kcnq2cure.org/wp-content/uploads/2016/02/cocktails-for-cure-copy.jpeg \nPlease Join Us For \nThe First Annual Fundraiser for KCNQ2 Cure Alliance \nSaturday\, April 25\n6:00-9:00pm\nTickets $25 \nAuction Items Include:\nWe have amazing auction items that include:\n· NEW YORK CITY VACATION: Airfare for two and 5 nights at W Times Square hotel\n· MONTANA / GLACIER NATIONAL PARK: Airfare for four people and private guest cottage for up 7 nights\n· NORTH CAROLINA CABIN TRIP: 4 Nights in the heart of the Smokey Mountains\n· DISNEY FAMILY TRIP: Airfare for four; 3 Nights and Car Rental in Orlando. Staying at Hyatt Regency Grand Cypress.\n· TELEVISED FISHING TRIP WITH DON DUBUC – Chartered fishing trip with Don Debuc to be aired three times on WWL-TV.\n· LSU VS. AUBURN – September 19th – Two Tickets West Sideline 43rd Row\, 45 yard line. \nWe will have a silent auction with great original artwork\, beauty items\, professional services\, overnight trips to New Orleans as well as a raffle featuring an iPad Air 2\, Stock your bar option\, and creole stuffed chickens from Chris’ Meats. \nFood Donated by Jacmel Inn \nHosted by Joe Arthur & Julia Sims and William & Destin Sims\nEvening Schedule\nCocktails & Silent Auction 6:00 pm – 8:30 pm\nSilent Auction Tables Will begin Closing at 8:15 pm\nLive Auction 8:00 pm\nImmediately following the Live Auction\, finish off your evening with dancing!!\nLive Music\nCheck-Out Begins 9:00 pm\nCash\, Personal Checks\, Credit Cards will be accepted.\nWe extend our gratitude to all of the sponsors\, advertisers and businesses\n that have made such generous contributions to our event.\n And\, we encourage you to give your support to these wonderful friends. \nHarper Johnson\, the daughter of Jim Johnson and Scotty Sims (from Ponchatoula)\, was diagnosed at the age of 1 with a very rare and severe neurological genetic condition called KCNQ2 Epilepsy. There are less than 150 know cases worldwide. \nWe were told she might never leave the hospital and would never walk or talk\, but we strongly believed otherwise. \nThis condition is extremely challenging as most KCNQ2 children suffer from terrible seizures\, have Autism\, are non-verbal and have significant cognitive delays. Seizures are particularly challenging and although Harper’s stopped at 5 weeks of age\, we are told they will most likely return. \nAlthough KCNQ2 Epilepsy hinders the ability to communicate among other developmental milestones\, all the KCNQ2 children share an incredible will to try! They are fighters! And like Harper\, they all light up the world with their laughter and tremendous smiles. \nWe are grateful that there are scientists and medical professionals researching KCNQ2 Epilepsy to try and find a cure! The more we can learn\, the more we can do to help our children gain ability and live easier\, healthier lives. \nThe KCNQ2 Cure Alliance is raising money for research and to support the annual Summit. Harper’s parents\, Scotty Sims and Jim Johnson started the KCNQ2 Cure Alliance with two other families (Sara James and Caroline Loewy) to help support research and host an Annual Summit to educate professionals and bring families together. For more information on Harper’s story\, please visit her Facebook page. \nWe ask you to join us in raising funds for a CURE! Purchase tickets below. If you are not able to attend but would like to donate\, please click the Donate button.
URL:https://www.kcnq2cure.org/event/cocktails-for-a-cure/
CATEGORIES:Fundraiser
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