KCNQ2 Cure Alliance

2020 KCNQ2 Cure Family & Professional Summit
2020-05-01 08:00 - 2020-05-03 17:00 (America/Denver) | 3549 Chestnut Street, Philadelphia, PA, 19104, United States
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.

2020 KCNQ2 Awareness Week
2020-03-01 - 2020-03-07
KCNQ2 Awareness week is an annual event aimed at raising awareness, education, and advocacy for the international community affected by KCNQ2 Epilepsy.

2019 New Horizons in Science Dinner - Gone Viral
2019-10-22 18:00 (Australia/Melbourne)
Date: Tuesday 22 October 2019
Time: 6pm drinks for 6:30pm dinner
Location: PwC Melbourne 2 Riverside Quay Southbank, VIC, 3006
Dress Code: Business
Donation: Suggested Sponsor Donation for a table
• Gold sponsor $10,000
• Silver Sponsor $8,000
• Bronze Sponsor $5,000
Please donate to our KCNQ2 Cure Alliance via:
Bank Account Name: KCNQ2 Epilepsy Foundation
KCNQ2 Bank Account Number: 1491545
BSB Number: 033039
Suggested Donation per Individual: $250
RSVP
by Tuesday 1 October 2019
bgleeson@bespokeapproach.com
Contact
Briony Gleeson 0396 540 735
bgleeson@bespokeapproach.com

KCNQ2 goes GLOCAL
2019-10-19 - 2019-10-20
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.
Our 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.

Update on KCNQ2 Studies in the Channelopathy-associated Epilepsy Research Center without Walls
2019-09-05 10:00 - 11:00 (America/Denver)
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.
Presenter: Alfred L. George, Jr., M.D. (Northwestern University)
Co-presenter: Anne Berg, Ph.D. (Northwestern University)

Fam Summer Classic
2019-08-10 15:00 - 18:00 (America/New_York) | Jersey Shore Arena, Wall, NJ
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.

A New Clinical Trial in KCNQ2-DEE and Upcoming Related Patient Survey
2019-07-24 10:00 - 11:00 (America/Denver)
A New Clinical Trial in KCNQ2-DEE and Upcoming Related Patient Survey
The 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.
Moderated by Caroline Loewy from the KCNQ2 Cure Alliance, topics will include:
• How mutations in the KCNQ2 gene for potassium channels in the brain are responsible for KCNQ2-DEE
• What we’ve learned to date from off-label use of Potiga®/Trobalt® as a treatment of pediatric KCNQ2-DEE
• Challenges of pediatric clinical trials in rare, genetic epilepsies
• Update on XEN496, a new pediatric formulation Potiga®/Trobalt® currently in development for KCNQ2-DEE
• Upcoming patient surveys and how this information will help shape future clinical trials
• Panel discussion, next steps, and ways to stay informed!
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Dr. 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.
Dr. 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.

2018 New Horizons and Science - JURASSIC ARC: From Dinosaurs to DNA
2018-10-31 18:00 - 22:00 (Australia/Melbourne) | Fundraiser_handbook_cover
Presented by KCNQ2 Cure Alliance and PwC Australia
Discoveries from the New Age of Exploration.
Join us for a night of scientific wow and wonder to raise money for those with a change in theri KCNQ2 gene.
Dr. 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.
Professor 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.
RSVP to bgleeson@bespokeapproach.com

2018 KCNQ2 Cure Family & Professional Summit
2018-09-14 - 2018-09-16 | Sheraton Park Hotel at the Anaheim Resort, Anaheim, CA, United States
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.
The 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.
Conference agenda and speakers to be announced. Conference registration is closed.

Funding Opportunities
We 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.

NATIONAL AGENCIES OR GROUPS
The 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.

The 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.

STATE AND/OR REGIONALLY LIMITED
All 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.

For 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.

For 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/

Idaho: 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.

Illinois: 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.

Indiana: 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.

Maryland: 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/.

North 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.

Ohio: 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.

Oregon: 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.

South 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.

Tennessee: 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.

MEDICAID/WAIVER PROGRAM ENROLLEES
If 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.
OTHER POTENTIAL FUNDING SOURCES
Funds may also be available through your church or synagogue; your local United Way, Kiwanis, Rotary or Lions Club.
PREPARING TO APPLY
Some 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.
A 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.”
Introduce 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.]”
A 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.
A 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.]
Procedures 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.
A 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.

TAXES
Don’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.
We 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.

Epilepsy Awareness Month
2017-11-01 - 2017-11-30
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.
Help educate people about epilepsy by sharing a fact-a-day on your social media networks during the month of November.
– Epilepsy affects people of all ages – from newborns to ninety.
– Epilepsy is a condition of the brain causing seizures (a disruption of the electrical communication between neurons).
– There are 150,000 new cases of #epilepsy in the United States each year.
– In 6 out of 10 epilepsy cases, the cause is unknown.
– “Epilepsy is the most common serious brain disorder worldwide. It has no age, racial, social class, national, or geographic boundaries.” – World Health Organization
– There are 65 million people around the world who have #epilepsy.

2017 KCNQ2 Cure Family & Professional Summit
2017-10-22 - 2017-10-24 | Doubletree by Hilton Silver Springs, Silver Springs, MD, United States
REGISTER HERE

2017 New Horizons in Science
2017-10-17 18:00 - 21:00 (Australia/Melbourne)
In our second annual scientific dinner, world-leading researchers King and
Olson explore the latest scientific frontier—and explain how venom from
tarantulas, scorpions, sea anemones and pit vipers could help save lives.

Politics and Other Drugs
2017-07-20 19:00 - 22:00 (Australia/Melbourne)
Join Emmy award-winning journalist Sara James for your political fix, 7pm Thursday 20th July at the Macedon Wine Room in Melbourne, Australia.
Trampled 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.
Why did it happen and what lies ahead for Australia, the US and the world?
ABC’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.
If 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.
Tickets 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

2017 Cocktails for a CURE
2017-05-06 18:00 - 22:00 (America/Denver)
Come join KCNQ2 Cure Alliance for our 1st Annual Cocktails for a CURE fundraiser in Colorado on May 6, 2017 6pm – 10pm
A 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.
Help us raise money to fund a natural history study for those with KCNQ2 epilepsy while having a great time!

Open Bar
Food
Silent Auction items including summer camps, birthday parties, golf, event tickets, beauty/spa items, fitness, restaurant gift cards, classroom baskets and more! Something for everyone!
Live Auction of exciting items and more!

Additional event details here
Tickets are now available
Questions?
Contact Scotty Sims at 303-887-9532 or scotty@kcnq2cure.org

Autism Awareness Month
2017-04-01 - 2017-04-30
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.
The 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.

KCNQ2 Cure United Kingdom Family Meet Up
2017-04-01
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.
The 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.
Our specific location has yet to be determined, but we will post an update soon.
Looking forward to meeting many new families!

REGISTER

KCNQ2 Awareness Week
2017-03-05 - 2017-03-11 | Blogs

Rare Disease Day
2017-02-28
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.
Each 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.

American Epilepsy Society
2016-12-02 - 2016-12-06 | KCNQ2-Associated Epilepsy: A Review of Variable Phenotypes and Neurodevelopmental Outcomes
LEARN, SHARE, CONNECT AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING
Get 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.
The 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.
Come to the AES Annual Meeting to discover the best science, new treatments and advanced technology solutions.

2016 Annual KCNQ2 Cure Summit
2016-10-07 - 2016-10-09
Registration is now open for KCNQ2 Cure’s 2016 Family & Professional Summit, October 7-9 at the Sheraton Hotel, Silver Springs, Maryland

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This 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.
REGISTRATION FEES
3-Day Family Summit Registration includes: all sessions, breakfast and lunch and dinner for Saturday and Sunday and our Saturday evening social event.
HOTEL INFORMATION
Rooms are available under our room block for $109 + applicable taxes. Rooms may be reserved at this link.
TRANSPORTATION

Ronald Reagan National Airport (DCA): 10.75 miles, approximately 35 minutes.
Baltimore Washington International Airport (BWI): 22 miles, approximately 40 minutes
Dulles International Airport (IAD): 28.6 miles, approximately 40 minutes (depending on traffic).

Silver Spring Metro Station Information
The 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.
The hotel offers a complimentary shuttle that you can utilize to get to and from the Silver Spring Metro station.
FAMILY SCHOLARSHIP PROGRAM
Our 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.
SIBLINGS CAMP
Our 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.
KCNQ2 CURE ACTIVITY ROOM
There will be an onsite activity room available for children with KCNQ2. Childcare will be provided in that room at an additional fee.
REGISTER TODAY!

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New Horizons
2016-03-16 17:00 - 20:00 (Australia/Melbourne)
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.
It 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.
Ms Bowman will detail the ingenuity, skill and teamwork required to lead NASA’s most ambitious effort in a generation.
Alice 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.
Our 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.
I’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.
This 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.

Disney-Pixar – The Good Dinosaur
2015-11-13

Cocktails for a Cure
2015-04-25 18:00 - 21:00 (America/Denver)
http://www.kcnq2cure.org/wp-content/uploads/2016/02/cocktails-for-cure-copy.jpeg
Please Join Us For
The First Annual Fundraiser for KCNQ2 Cure Alliance
Saturday, April 25
6:00-9:00pm
Tickets $25
Auction Items Include:
We have amazing auction items that include:
· NEW YORK CITY VACATION: Airfare for two and 5 nights at W Times Square hotel
· MONTANA / GLACIER NATIONAL PARK: Airfare for four people and private guest cottage for up 7 nights
· NORTH CAROLINA CABIN TRIP: 4 Nights in the heart of the Smokey Mountains
· DISNEY FAMILY TRIP: Airfare for four; 3 Nights and Car Rental in Orlando. Staying at Hyatt Regency Grand Cypress.
· TELEVISED FISHING TRIP WITH DON DUBUC – Chartered fishing trip with Don Debuc to be aired three times on WWL-TV.
· LSU VS. AUBURN – September 19th – Two Tickets West Sideline 43rd Row, 45 yard line.
We 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.
Food Donated by Jacmel Inn
Hosted by Joe Arthur & Julia Sims and William & Destin Sims
Evening Schedule
Cocktails & Silent Auction 6:00 pm – 8:30 pm
Silent Auction Tables Will begin Closing at 8:15 pm
Live Auction 8:00 pm
Immediately following the Live Auction, finish off your evening with dancing!!
Live Music
Check-Out Begins 9:00 pm
Cash, Personal Checks, Credit Cards will be accepted.
We extend our gratitude to all of the sponsors, advertisers and businesses
that have made such generous contributions to our event.
And, we encourage you to give your support to these wonderful friends.
Harper 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.
We were told she might never leave the hospital and would never walk or talk, but we strongly believed otherwise.
This 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.
Although 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.
We 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.
The 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.
We 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.
