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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20200501T080000
DTEND;TZID=America/Denver:20200503T170000
DTSTAMP:20260407T113804
CREATED:20190506T222924Z
LAST-MODIFIED:20190506T222924Z
UID:678-1588320000-1588525200@www.kcnq2cure.org
SUMMARY:2020 KCNQ2 Cure Family & Professional Summit
DESCRIPTION:Join us for KCNQ2 Cure’s 6th Family and Professional Summit which joins all groups committed to improving the lives of those impacted by KCNQ2 encephalopathy – 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.
URL:https://www.kcnq2cure.org/event/2020-kcnq2-cure-family-professional-summit/
LOCATION:3549 Chestnut Street\, Philadelphia\, PA\, 19104\, United States
CATEGORIES:Summit
ATTACH;FMTTYPE=image/jpeg:https://www.kcnq2cure.org/wp-content/uploads/2019/03/Summit2020_SaveDate.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200301
DTEND;VALUE=DATE:20200308
DTSTAMP:20260407T113804
CREATED:20190506T225555Z
LAST-MODIFIED:20190506T225644Z
UID:680-1583020800-1583625599@www.kcnq2cure.org
SUMMARY:2020 KCNQ2 Awareness Week
DESCRIPTION:KCNQ2 Awareness week is an annual event aimed at raising awareness\, education\, and advocacy for the international community affected by KCNQ2 Epilepsy.
URL:https://www.kcnq2cure.org/event/2020-kcnq2-awareness-week/
CATEGORIES:Awareness
ATTACH;FMTTYPE=image/jpeg:https://www.kcnq2cure.org/wp-content/uploads/2019/04/28278356_10156336033380921_1259079168_o.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20191022T180000
DTEND;TZID=Australia/Melbourne:20191022T180000
DTSTAMP:20260407T113804
CREATED:20190726T181246Z
LAST-MODIFIED:20190726T181246Z
UID:76878-1571767200-1571767200@www.kcnq2cure.org
SUMMARY:2019 New Horizons in Science Dinner - Gone Viral
DESCRIPTION:Date: Tuesday 22 October 2019\nTime: 6pm drinks for 6:30pm dinner \nLocation: PwC Melbourne 2 Riverside Quay Southbank\, VIC\, 3006\nDress Code: Business \nDonation: Suggested Sponsor Donation for a table\n•   Gold sponsor $10\,000\n•   Silver Sponsor $8\,000\n•   Bronze Sponsor $5\,000 \nPlease donate to our KCNQ2 Cure Alliance via:\nBank Account Name: KCNQ2 Epilepsy Foundation\nKCNQ2 Bank Account Number: 1491545\nBSB Number: 033039 \nSuggested Donation per Individual: $250 \nRSVP\nby Tuesday 1 October 2019\nbgleeson@bespokeapproach.com \nContact\nBriony Gleeson 0396 540 735\nbgleeson@bespokeapproach.com
URL:https://www.kcnq2cure.org/event/2019-new-horizons-in-science-dinner-gone-viral/
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=application/pdf:https://www.kcnq2cure.org/wp-content/uploads/2019/07/New-Horizons-in-Science-Dinner-Invitation-22-October-2019.pdf
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191019
DTEND;VALUE=DATE:20191021
DTSTAMP:20260407T113804
CREATED:20190514T190801Z
LAST-MODIFIED:20190516T134448Z
UID:689-1571443200-1571615999@www.kcnq2cure.org
SUMMARY:KCNQ2 goes GLOCAL
DESCRIPTION:This October 19th and 20th we want as many people as possible to find a way to celebrate the KCNQ2 community and to raise some money at the same time. We are a diverse group with many different ages and locations. And though we are global we are made up of people living in different local communities. So we want to show people how global and local (Glocal) we are. \nOur plan is to get as many people to organize as many local events as possible. A 5K\, a walk to a local landmark\, a potluck\, a hike to the top of a local mountain\, an afternoon at a local park\, a trek to a local brewery. Anything! We want YOU to plan something that you can do in your community to celebrate our KCNQ2 kids\, even better if it’s able to raise some money to help advance research toward a cure.
URL:https://www.kcnq2cure.org/event/kcnq2-goes-glocal/
CATEGORIES:Awareness,Fundraiser
ATTACH;FMTTYPE=image/jpeg:https://www.kcnq2cure.org/wp-content/uploads/2019/05/glocal_fundraiser_graphic-01-e1558013975757.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20190905T100000
DTEND;TZID=America/Denver:20190905T110000
DTSTAMP:20260407T113804
CREATED:20190726T182847Z
LAST-MODIFIED:20190905T212319Z
UID:76880-1567677600-1567681200@www.kcnq2cure.org
SUMMARY:Update on KCNQ2 Studies in the Channelopathy-associated Epilepsy Research Center without Walls
DESCRIPTION:This webinar will provide updates to the KCNQ2 community regarding ongoing studies by the Channelopathy-associated Epilepsy Research Center without Walls. The main focus will be on efforts to determine the functional consequences of 80 KCNQ2 variants of unknown significance\, and on investigations using human induced pluripotent stem cells (hiPSC) to create KCNQ2-mutant neurons for physiological and pharmacological testing. This work is designed to elucidate molecular and cellular defects associated with KCNQ2 variants and explore pharmacological strategies to correct these defects. \nPresenter:	Alfred L. George\, Jr.\, M.D. (Northwestern University)\nCo-presenter:	Anne Berg\, Ph.D. (Northwestern University)
URL:https://www.kcnq2cure.org/event/update-on-kcnq2-studies-in-the-channelopathy-associated-epilepsy-research-center-without-walls/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20190810T150000
DTEND;TZID=America/New_York:20190810T180000
DTSTAMP:20260407T113804
CREATED:20190720T215119Z
LAST-MODIFIED:20190720T215625Z
UID:76870-1565449200-1565460000@www.kcnq2cure.org
SUMMARY:Fam Summer Classic
DESCRIPTION:Join our friends and families as they raise awareness of KCNQ2. A portion of the proceeds will go to KCNQ2 Cure Alliance to help Nolan and his friends find better medicine to live their best life possible.
URL:https://www.kcnq2cure.org/event/fam-summer-classic/
LOCATION:Jersey Shore Arena\, Wall\, NJ
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=image/jpeg:https://www.kcnq2cure.org/wp-content/uploads/2019/07/nolan-awareness-e1563659648807.jpg
ORGANIZER;CN="Patrick Lynch":MAILTO:nfftreas@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20190724T100000
DTEND;TZID=America/Denver:20190724T110000
DTSTAMP:20260407T113804
CREATED:20190723T015641Z
LAST-MODIFIED:20190723T015641Z
UID:76877-1563962400-1563966000@www.kcnq2cure.org
SUMMARY:A New Clinical Trial in KCNQ2-DEE and Upcoming Related Patient Survey
DESCRIPTION:A New Clinical Trial in KCNQ2-DEE and Upcoming Related Patient Survey \nThe KCNQ2 Cure Alliance has invited Dr. John Millichap\, a Pediatric Epileptologist focused on KCNQ2 developmental and epileptic encephalopathy (KCNQ2-DEE)\, and Dr. Simon Pimstone\, CEO of Xenon Pharmaceuticals\, to participate in this webinar. \nModerated by Caroline Loewy from the KCNQ2 Cure Alliance\, topics will include:\n•	How mutations in the KCNQ2 gene for potassium channels in the brain are responsible for KCNQ2-DEE\n•	What we’ve learned to date from off-label use of Potiga®/Trobalt® as a treatment of pediatric KCNQ2-DEE\n•	Challenges of pediatric clinical trials in rare\, genetic epilepsies\n•	Update on XEN496\, a new pediatric formulation Potiga®/Trobalt® currently in development for KCNQ2-DEE\n•	Upcoming patient surveys and how this information will help shape future clinical trials\n•	Panel discussion\, next steps\, and ways to stay informed! \n————————————————————————-\nDr. Millichap is a Pediatric Epileptologist in the Comprehensive Epilepsy Center\, Ann & Robert H. Lurie Children’s Hospital of Chicago\, and Associate Professor of Pediatrics and Neurology at Northwestern University Feinberg School of Medicine. \nDr. Simon Pimstone is the CEO of Xenon Pharmaceuticals\, a company committed to developing innovative therapeutics to improve the lives of patients with neurological disorders\, including rare central nervous system (CNS) conditions\, with a particular focus on epilepsy.
URL:https://www.kcnq2cure.org/event/a-new-clinical-trial-in-kcnq2-dee-and-upcoming-related-patient-survey/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20181031T180000
DTEND;TZID=Australia/Melbourne:20181031T220000
DTSTAMP:20260407T113804
CREATED:20180924T022254Z
LAST-MODIFIED:20190726T175339Z
UID:76747-1541008800-1541023200@www.kcnq2cure.org
SUMMARY:2018 New Horizons and Science - JURASSIC ARC: From Dinosaurs to DNA
DESCRIPTION:Presented by KCNQ2 Cure Alliance and PwC Australia \nDiscoveries from the New Age of Exploration. \nJoin us for a night of scientific wow and wonder to raise money for those with a change in theri KCNQ2 gene. \nDr. Lindsay Zanno is a trailblazer in more ways than one. She’s the woman who trekked the rugged American desert to hunt for one-of-a-kind find — and hit pay dirt. In March\, this pioneering paleontologist uncovered a rare cache of 97 million-year-old dinosaur eggs. \nProfessor Steven Petrou charts the landscape of the human mind. The Director of Melbourne’s Florey Institute of Neuroscience and Mental Health is a globally recognized leader in rare brain disorders and a master of the lab. \nRSVP to bgleeson@bespokeapproach.com
URL:https://www.kcnq2cure.org/event/jurassic-arc/
LOCATION:Fundraiser_handbook_cover
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=image/jpeg:https://www.kcnq2cure.org/wp-content/uploads/2019/03/KCNQ2_explained_2-01.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20180914
DTEND;VALUE=DATE:20180917
DTSTAMP:20260407T113804
CREATED:20180218T175253Z
LAST-MODIFIED:20190624T185043Z
UID:76547-1536883200-1537142399@www.kcnq2cure.org
SUMMARY:2018 KCNQ2 Cure Family & Professional Summit
DESCRIPTION:[one_third padding=”0 40px 0 40px”][/one_third][two_third_last padding=”40px 40px 0 40px”]KCNQ2 Cure is pleased to announce that our 2018 Summit will take place on September 14-16\, 2018 at the Sheraton Park Hotel at the Anaheim Resort in Anaheim\, California. \nThe Summit will include family and professional sessions\, childcare areas\, and family events. A special room rate of $139/night + taxes and fees has been set and will be available during registration. \nConference agenda and speakers to be announced. Conference registration is closed.\n[/two_third_last]\n [full_width padding=”0 40px 0 40px”]\nFunding Opportunities \nWe are aware that there are costs that families incur when traveling to this event that could possibly impede their participation. In an effort to assist you\, we have put together a list of Funding Agencies that offer grants to families to defer conference travel expenses. Special acknowledgment to the Aicardi Foundation for compiling many of these helpful pointers.\n\n  \nNATIONAL AGENCIES OR GROUPS \nThe ARC of the United States. Each chapter offers different programs/services\, so you need to check your local chapter:  http://www.thearc.org/find-a-chapter. As an example\, the ARC of IL offers a Consumer Stipend Project which offers grants to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues:  http://www.thearcofil.org/programs. \n\nThe Prayer Child Foundation\, based in Arizona\, provides assistance to children that are 18 years and younger with physical and emotional challenges. They provide support to individuals located within the PCF’s supporters’ local communities\, but it is not clear where those communities are. There are no other specific guidelines\, and they have a very open application process with no application deadline. They promise a 6-week turnaround:  http://www.prayerchild.org/submit_request.html. \n\n\n\nSTATE AND/OR REGIONALLY LIMITED \nAll states have Councils on Developmental Disabilities\, and some will fund conference travel. Some states require that you agree to share the knowledge you gained at the conference with others groups in your state (and we would recommend that you target schools/classrooms with other students with DS as your point of sharing\, as often there is not another family with DS nearby). We have tried to identify all the active programs across the United States\, but if your state is not listed below\, you should take a minute to review your own state’s CDD page in case we have overlooked something. Click here for a roster of Developmental Disabilities Boards by state: http://www.nasddds.org/state-agencies/ Click on your state and then on “county boards” and select your county of residence.  January is a key month\, in that funds are typically appropriated at the beginning of the year on a first-come\, first served basis. \n \nFor states that are not listed below\, if there was no specific link to a consumer investment/empowerment fund\, it does not mean there is not such a fund in your state. Contact the council directly and inquire if they have available grants to help families & individuals with disabilities to attend conferences relating to that disability. \n \nFor families in Florida\, Indiana (including the greater Michiana area)\, Rhode Island and New York\, an organization called Hannah & Friends funds quality of life grants for families who care for children and adults with special needs. 2018 funding is opens in March:  http://www.hannahandfriends.org/resources/hannahs-helping-hands-grants/\n \nIdaho: The state’s Council on Developmental Disabilities provides funding for families to attend conferences relating to a family member’s disability. You need to file a post-attendance report stating outcomes/lessons learned and a plan to share what you’ve learned with other Idaho families affected by developmental disability. Deadlines are 30 days prior to the conference: http://www.icdd.idaho.gov/resources/funding.html.\n \nIllinois:  Illinois StarNet has a Family Fellowship to reimburse parents for the expense of attending workshops\, seminars\, or conferences\, up to $200 annually:  http://www.thecenterweb.org/starnet/funding.html They give preference to in-state events\, but it would still be worth a shot. The deadline appears to be ongoing.\n \nIndiana: The state’s Consumer Investment Fund supports conference travel. The application is a bit challenging\, but they will fund up to $1000 per family to attend conferences relating to the family member’s disability. Deadline is 5 weeks prior to an out-of-state event: http://www.in.gov/gpcpd/files/Individual_CIF_Application.pdf.\n\nMaryland: The state’s Developmental Disabilities Council supports travel to out-of-state conferences. There is no fixed amount\, but they encourage cost-sharing with families\, rather than subsidization of the entire costs. Deadline is a minimum of 90 days prior to conference:  http://www.md-council.org/funding/conference-participation-fund/.\n \nNorth Carolina: The state’s Jean Wolff-Rossi for Participant Involvement Fund offers up to $800 per person (and up to a maximum of $2400 per event\, regardless of how many people apply) for participation in out-of-state conferences. Deadlines for application are 30 days prior to an out-of-state event; decisions are made on an ongoing basis:  http://nccdd.org/initiatives/conference-funding/rossi-fund.html.\n \nOhio: The Cuyahoga County Board of Developmental Disabilities Family Support Program may fund registration costs for conferences for families on topics related to the eligible individual. Prior approval is required for this program to fund training and conference attendance. The cost of these services will be deducted from your total annual program allowance. To check eligibility\, email familysupport@cuyahogaBDD.org or by phone at 216-241-8230.\n \nOregon: The Consumer Involvement Fund is available for residents of Oregon. You can find the application at:  http://ocdd.org/index.php/ocdd/docs/consumer_involvement_fund_application_for_individuals/ or call 800-292-4154 to check availability.\n\nSouth Dakota: The state’s Council on Developmental Disabilities provides funding up to $750 per person for out-of-state conference travel. Deadline is 60 days prior to the event. Program details and the application can be found here:  https://www.state.sd.us/eforms/secure/eforms/E0512V2-DDCRequestTravelExpenses.pdf.\n\nTennessee: The state’s Council on Developmental Disabilities provides grants of up to $500 for individuals\, and $1000 for families\, to attend conferences related to a family member’s disability. Deadline is 30 days prior to the event: http://www.tnstep.org/news/?id=460.\n\n\nMEDICAID/WAIVER PROGRAM ENROLLEES \nIf your child is on Medicaid\, especially a home and community-based waiver\, check with your case manager. Many waivers offer educational assistance for parents to attend conferences\, paying the registration fee. Travel is not typically covered\, but it is worth asking about. \nOTHER POTENTIAL FUNDING SOURCES \nFunds may also be available through your church or synagogue; your local United Way\, Kiwanis\, Rotary or Lions Club. \nPREPARING TO APPLY \nSome organizations may not have a form to fill out—in that case\, you will need to write a letter or a personal statement and submit that. Here are some suggested guidelines for what to include in that letter (with thanks to FamilyConnect.org for the model). It may be that some of these are not relevant to you—they are meant only to serve as a guideline\, not to be followed rigidly. \nA summary statement: “I am asking for your financial assistance in providing travel and convention funding necessary so that I/my family may attend the KCNQ2 Cure Alliance Family Conference in Anaheim\, California on September 14-16\,2018.” \nIntroduce your child and explain KCNQ2 epilepsy: “My child\, _____\, is _____ months/years old and has KCNQ2 epilepsy. KCNQ2 epilepsy is a rare and intractable form of epilepsy. It causes frequent\, hard-to-control seizures and a range of significant physical and cognitive disabilities; and risks of early mortality. Details about the syndrome can be found at the KCNQ2 Cure Alliance website: kcnq2cure.org. [You should add a few details here about your child’s personality or the severity of the presentation of symptoms\, etc.\, to help personalize the request.]” \nA statement of the costs: How much will it cost (which you should probably work out before you write this section) and how much of the costs will you be able to come up with on your own. \nA statement of your goals in attending the conference: “By attending the conference I hope to gain valuable information in order to enrich my family’s relationship with\, and to provide the best possible support and care for\, our child with KCNQ2 epilepsy. The conference will also provide enormous family support as we make connections with other families affected by this rare\, and sometimes isolating\, disorder.” [You might also here indicate if your child has siblings who would be attending and if that would be a particular benefit.] \nProcedures of the conference: “The KCNQ2 Cure Alliance Family & Professional Conference will last three days. Sessions are geared toward coping skills of parents\, educational and medical know-how in parenting our children\, important updates from top scientific researchers in the field\, as well as social activities for KCNQ2 children\, their siblings\, and parents.” You might also want to include the event agenda and/or list of confirmed speakers. \nA detailed budget: “Our plane tickets will cost $_____. Taxi fare from the airport (round trip) will be $_____.” Or\, “We will be driving our own vehicle ____ miles to the conference and back. Mileage expenses for the trip will be ______. [here\, use the IRS formula for medical transportation of .23/mile (https://www.irs.gov/Tax-Professionals/Standard-Mileage-Rates)]. You could also add any hotel stays and costs of meals that you will have in transit to the conference. \n  \nTAXES  \nDon’t forget that\, even if you aren’t able to find a grant to assist you\, some of the expenses you incur in traveling to a conference at which medical information is shared is CURRENTLY tax deductible if you itemize your medical expenses on your federal tax return.  See “medical conferences” here for current rules: https://www.irs.gov/publications/p502/ar02.html. \nWe hope that these resources are helpful\, and please let us know if you are successful in obtaining a grant\, as we would like to keep track of funders who have been supportive. Or if you have additional funding suggestions\, please email Scotty Sims to have them added here.\n[/full_width]
URL:https://www.kcnq2cure.org/event/2018-kcnq2-cure-family-professional-summit/
LOCATION:Sheraton Park Hotel at the Anaheim Resort\, Anaheim\, CA\, United States
CATEGORIES:Summit
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20171101
DTEND;VALUE=DATE:20171201
DTSTAMP:20260407T113804
CREATED:20161226T232414Z
LAST-MODIFIED:20190611T164904Z
UID:1051-1509494400-1512086399@www.kcnq2cure.org
SUMMARY:Epilepsy Awareness Month
DESCRIPTION:Epilepsy is the 4th most common neurological disease in the nation. In fact\, 1 in 26 people will be diagnosed with epilepsy at some point in their lifetime. Yet epilepsy remains misunderstood by the general public\, discriminated against\, and underfunded in research initiatives. Anyone can have epilepsy\, and everyone should know about the prevalence\, impact and seizure first aid.   \nHelp educate people about epilepsy by sharing a fact-a-day on your social media networks during the month of November.\n– Epilepsy affects people of all ages – from newborns to ninety.\n– Epilepsy is a condition of the brain causing seizures (a disruption of the electrical communication between neurons).\n– There are 150\,000 new cases of #epilepsy in the United States each year.\n– In 6 out of 10 epilepsy cases\, the cause is unknown.\n– “Epilepsy is the most common serious brain disorder worldwide. It has no age\, racial\, social class\, national\, or geographic boundaries.” – World Health Organization\n– There are 65 million people around the world who have #epilepsy.
URL:https://www.kcnq2cure.org/event/epilepsy-awareness-month/
CATEGORIES:Awareness
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20171022
DTEND;VALUE=DATE:20171025
DTSTAMP:20260407T113804
CREATED:20170907T170038Z
LAST-MODIFIED:20190624T185426Z
UID:1119-1508630400-1508889599@www.kcnq2cure.org
SUMMARY:2017 KCNQ2 Cure Family & Professional Summit
DESCRIPTION:REGISTER HERE
URL:https://www.kcnq2cure.org/event/2017-summit/
LOCATION:Doubletree by Hilton Silver Springs\, Silver Springs\, MD\, United States
CATEGORIES:Summit
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20171017T180000
DTEND;TZID=Australia/Melbourne:20171017T210000
DTSTAMP:20260407T113804
CREATED:20170907T165547Z
LAST-MODIFIED:20190726T175155Z
UID:49968-1508263200-1508274000@www.kcnq2cure.org
SUMMARY:2017 New Horizons in Science
DESCRIPTION:In our second annual scientific dinner\, world-leading researchers King and\nOlson explore the latest scientific frontier—and explain how venom from\ntarantulas\, scorpions\, sea anemones and pit vipers could help save lives. \n[one_half][/one_half][one_half_last][/one_half_last]
URL:https://www.kcnq2cure.org/event/new-horizons-science/
CATEGORIES:Fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20170720T190000
DTEND;TZID=Australia/Melbourne:20170720T220000
DTSTAMP:20260407T113804
CREATED:20170715T200421Z
LAST-MODIFIED:20190611T164709Z
UID:32243-1500577200-1500588000@www.kcnq2cure.org
SUMMARY:Politics and Other Drugs
DESCRIPTION:Join Emmy award-winning journalist Sara James for your political fix\, 7pm Thursday 20th July at the Macedon Wine Room in Melbourne\, Australia. \nTrampled by the Trump Train? Broken by Brexit? Left wondering about One Nation? You’ve just survived the Year of Voting Dangerously. The most shocking series of elections since WWII shook the world order and shattered assumptions.\nWhy did it happen and what lies ahead for Australia\, the US and the world? \nABC’s American in Oz explores the big trends and explains how hackers and hillbillies\, salamanders and salmon\, Fake News\, Facebook and a fancy New York wedding culminated in a New World Order. And then of course there’s Russia. \nIf you like Real News served with a dash of data and a generous helping of humour\, please join us. There’ll be jazz & blues band ‘The BluePrints’ and an amazing 3 course meal designed by chef/owner Steven Gerdes. \nTickets are $75 per head – bookings required. A portion of all proceeds support KCNQ2 Cure for medical research into rare genetic epilepsies. Please join us for truly special evening. Book now on (03) 5426 3030
URL:https://www.kcnq2cure.org/event/politics-and-other-drugs/
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=:
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20170506T180000
DTEND;TZID=America/Denver:20170506T220000
DTSTAMP:20260407T113804
CREATED:20170322T210307Z
LAST-MODIFIED:20190624T191902Z
UID:1250-1494093600-1494108000@www.kcnq2cure.org
SUMMARY:2017 Cocktails for a CURE
DESCRIPTION:Come join KCNQ2 Cure Alliance for our 1st Annual Cocktails for a CURE fundraiser in Colorado on May 6\, 2017 6pm – 10pm \nA perfect date night or Girls/Guys Night Out! Come join the fun and support those with a catastrophic form epilepsy ! Invite your friends\, family\, and neighbors to this awesome “adults only” event! Tickets are $45 per person for pre-paid tickets or $50 each at the door. \nHelp us raise money to fund a natural history study for those with KCNQ2 epilepsy while having a great time! \n\n\nOpen Bar\nFood\nSilent Auction items including summer camps\, birthday parties\, golf\, event tickets\, beauty/spa items\, fitness\, restaurant gift cards\, classroom baskets and more! Something for everyone!\nLive Auction of exciting items and more!\n\n\nAdditional event details here \nTickets are now available \nQuestions? \nContact Scotty Sims at 303-887-9532 or scotty@kcnq2cure.org
URL:https://www.kcnq2cure.org/event/2017-cocktails-cure/
CATEGORIES:Cocktails for a CURE
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170401
DTEND;VALUE=DATE:20170501
DTSTAMP:20260407T113804
CREATED:20161226T232717Z
LAST-MODIFIED:20161226T232717Z
UID:1053-1491004800-1493596799@www.kcnq2cure.org
SUMMARY:Autism Awareness Month
DESCRIPTION:Most people recognize April 1st as a significant day on the calendar because of April Fools’ Day\, but within the realm of autism\, the first day of April marks something a little bit different. Namely\, it’s the first day of National Autism Awareness Month\, first given this designation in April of 1970 by the Autism Society. \nThe goal of this month is to educate the public and build awareness around autism spectrum disorders and the difficulties and challenges that children with an autism spectrum disorder face. The official imagery has since come to be a puzzle piece. The idea behind the puzzle pieces is to represent the complexity of autism spectrum disorders\, and also\, as every puzzle piece is different in some way\, they represent the diversity of every individual affected by autism. Lastly\, the bright colors of the ribbon signify hope – hope that through increased awareness\, early intervention and appropriate treatments\, all people with autism will be able to lead happier\, fuller\, more complete lives and improve their daily living skills. In addition to the puzzle piece\, the official color for National Autism Awareness Month is a bright royal blue.
URL:https://www.kcnq2cure.org/event/autism-awareness-month/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170401
DTEND;VALUE=DATE:20170402
DTSTAMP:20260407T113804
CREATED:20170115T170812Z
LAST-MODIFIED:20190611T164942Z
UID:1111-1491004800-1491091199@www.kcnq2cure.org
SUMMARY:KCNQ2 Cure United Kingdom Family Meet Up
DESCRIPTION:The KCNQ2 Cure Alliance is excited to announce our UK family meet up. In addition to European and American families\, Dr. Sarah Weckhuysen will be joining us from Belgium to give a presentation. For those who are not familiar with Dr. Weckhuysen\, she was instrumental in the discovery of KCNQ2 Encephalopathy. \nThe event is open to all families with a KCNQ2 epilepsy diagnosis. Meet ups are a great way for you and your extended family to meet others who have a loved one with KCNQ2 Encephalopathy to share stories\, compare resources and find new kinds of support. \nOur specific location has yet to be determined\, but we will post an update soon. \nLooking forward to meeting many new families! \n  \nREGISTER
URL:https://www.kcnq2cure.org/event/kcnq2-uk-meet-up/
CATEGORIES:Meet-ups
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170305
DTEND;VALUE=DATE:20170312
DTSTAMP:20260407T113804
CREATED:20160212T213911Z
LAST-MODIFIED:20190611T164952Z
UID:276-1488672000-1489276799@www.kcnq2cure.org
SUMMARY:KCNQ2 Awareness Week
DESCRIPTION:
URL:https://www.kcnq2cure.org/event/awareness-week-2016/
LOCATION:Blogs
CATEGORIES:Awareness
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170228
DTEND;VALUE=DATE:20170301
DTSTAMP:20260407T113804
CREATED:20160212T214659Z
LAST-MODIFIED:20160212T214659Z
UID:730-1488240000-1488326399@www.kcnq2cure.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day® was first observed in Europe in 2008. It was established by EURORDIS\, the European Rare Disease Organization. In 2009\, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. NORD is thrilled to celebrate the 7th US Rare Disease Day this year! The concept has continued to expand beyond the US and Europe. In 2014\, more than 80 countries participated and\, through social media\, the awareness and participation has an even broader reach. \nEach year\, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.
URL:https://www.kcnq2cure.org/event/rare-disease-day/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161202
DTEND;VALUE=DATE:20161207
DTSTAMP:20260407T113804
CREATED:20160212T205808Z
LAST-MODIFIED:20160212T205808Z
UID:729-1480636800-1481068799@www.kcnq2cure.org
SUMMARY:American Epilepsy Society
DESCRIPTION:LEARN\, SHARE\, CONNECT AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING \nGet a first-hand look at the latest research and the most recent innovations in epilepsy and meet the people leading these advances — more than 5\,000 top epilepsy professionals from more than 60 countries will attend. \nThe AES Annual Meeting is like no other bringing diverse professionals who are involved in both research and clinical care for people with epilepsy — neurologists\, epileptologists\, neurophysiologists\, neuroscientists\, neurosurgeons\, internists\, pediatricians\, pharmacists\, nurses\, social workers and other professionals – from private practice\, academia\, industry and government. \nCome to the AES Annual Meeting to discover the best science\, new treatments and advanced technology solutions.
URL:https://www.kcnq2cure.org/event/american-epilepsy-society/
LOCATION:KCNQ2-Associated Epilepsy: A Review of Variable Phenotypes and Neurodevelopmental Outcomes
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161007
DTEND;VALUE=DATE:20161010
DTSTAMP:20260407T113805
CREATED:20160212T213936Z
LAST-MODIFIED:20190611T165014Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20160316T170000
DTEND;TZID=Australia/Melbourne:20160316T200000
DTSTAMP:20260407T113805
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20151113
DTEND;VALUE=DATE:20151114
DTSTAMP:20260407T113805
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20150425T180000
DTEND;TZID=America/Denver:20150425T210000
DTSTAMP:20260407T113805
CREATED:20160213T034439Z
LAST-MODIFIED:20190611T165101Z
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
END:VEVENT
END:VCALENDAR