November 12th Denver, Colorado
REGISTER NOW!
This 1-day event is unique in that it is designed to unite all groups committed to improving the lives of those with KCNQ2 – 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.
AGENDA & SPEAKERS
7:45 am >> Breakfast & Registration - 17th by Magnolia
8:30 am >> Welcome & Introduction - Sara James, KCNQ2 Cure Alliance Vice-President
8:40 am >> KCNQ2 101: Update and subtypes - Ingrid Scheffer, MD
9:15 am >> Cambridge Elements and KCNQ2 cell lines - Alfred George, MD
9:50 am >> Deciphering the Genetics in KCNQ2 - Stacy Cohen, MS, LCGC
10:25 am >> BREAK
10:40 am >> Invitae/Ciitizen Observational Study - Daniel Anderson
11:15 am >> Xenon clinical trial update - Xenon Pharmaceuticals
12:00 pm >> LUNCH
1:00 pm >> Seizure types in KCNQ2 and indicated treatments - John Millichap, MD
1:35 pm >> Natural History Study Update - Annapurna Poduri, MD
2:10 pm >> KCNQ2 research a European update - Sarah Weckhuysen, MD
2:45 pm >> BREAK
3:00 pm >> Gene therapies for neurological disorders with a focus on KCNQ2 including editing strategies - Orrin Devinsky, MD
3:45 pm >> Applied Behavioral Analysis (ABA) - Carrie Scott, Thrive Autism Collaborative
4:10 pm >> Let's Talk Puberty in Special Medical Needs population - Eliza Buyers, MD
This summit has been made possible by generous funding from the following organizations
HOTEL INFORMATION
Magnolia Hotel Denver
818 17th Street
Denver, Colorado, USA 80202
TELE 1-888-915-1110 or 303-607-9000
Hotel website
You can book your room for the $159/night group rate via the link you will receive in your Summit registration confirmation email. Group room rates apply to the November 11-13 dates.
AIR TRANSPORTATION
Denver International Airport (DEN)
Visit DEN airport website
This hotel does not provide shuttle service.
GROUND TRANSPORTATION FROM DENVER INTERNATIONAL AIRPORT
Travel Distance: Approximately 27 miles
Travel times and costs below are estimates and final travel times are dependent upon traffic
UBER/LYFT
Uber now offers uberASSIST. These vehicles can accommodate folding wheelchairs, walkers, collapsible scooters, but do not have wheelchair-accessible ramps or lifts. They run the same cost as a Lyft or UberX
LIGHT RAIL (Train)
Denver Light Rail runs from the Denver Airport to the Down Town Denver Union Station
Take the A-Line
Fee: 10.50 USD (Adult) 5.25 USD (Disability) 3.20 USD (YOuth age 6-19)
You can pick up the 16th Street "Free Mall Ride" at Union Station to the Stout Street stop. The Hotel is one block on the corner of 17th Street and Stout Street.
Our conference scholarship program is closed for 2022. Please review additional funding opportunities below if you are still looking for financial support for the conference.
Other Potential 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.
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.
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.
Indiana: The state’s Consumer IEducation Fund supports conference travel. Funds are limited to $1,500 per person, per event for an individual, and up to $2,000 for a household. Deadline is at least 5 weeks prior to an out-of-state event: https://www.in.gov/gpcpd/featured-projects/consumer-education-fund/
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.
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 Scholarship Fund assists Tennesseans with disabilities and their families, especially individuals from diverse cultural backgrounds, to attend leadership coalition meetings, disability conferences, and disability trainings held in Tennessee and across the U.S. Funds can reimburse individuals or families for the cost of registration, attendant care, hotel/lodging, transportation, child care or respite care, meals and other related travel expenses. All scholarship awards are subject to the availability of funds. Deadline is 30 days prior to the event: https://www.tn.gov/cdd/training-and-news/leadership-training-and-development/scholarship-fund.html
MEDICAID/WAIVER PROGRAM ENROLLEES
If your child is on Medicaid, especially 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 Family Sumit in Denver, Colorado, on November 11-13, 2022.”
Introduce your child and explain KCNQ2: “My child, _____, is _____ months/years old and has KCNQ2 Developmental and Epileptic Encephalopathy. KCNQ2-DEE 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 KCNQ2 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-DEE. 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 Family & Professional Summit will last two 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 .17/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 to have them added here.
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How often and where is the conference held?
KCNQ2 Cure typically hosts its Family & Professional Conference in-person every 18 months. The location changes from region to region across the U.S. The location for our 2022 event will be held at The Magnolia Hotel in Denver, Colorado. Our last in-person conference was held in 2018 in Anaheim, California, with a mini virtual conference held in 2021.
Is onsite registration available?
Onsite registration IS NOT available. All attendees must register for the event by October 30th.
What is included in my registration fee?
A 2-day family registration fee includes admission to all sessions, breakfast and lunch each day and our Friday evening meet and greet dinner and Saturday evening outing. Thanks to the generosity of our sponsors, all family members and caregivers in attendance are also invited to our family events on Friday and Saturday evenings. A professional registration includes admission to all sessions.
What is the cancellation policy?
Cancellation requests must be submitted in writing to scotty@kcnq2cure.org. Cancellation requests received on or before October 1st are refundable, subject to a $50 administrative fee.
Cancellation requests received after October 1st, are nonrefundable. Exceptions may be made for family emergencies and must be submitted via email to scotty@kcnq2cure.org.
No-shows at the 2022 Family & Professional Summit are not eligible for a refund.
If you cancel and are entitled to a refund, you can expect the refund within 30 days. All refunds will be issued back to the original payment type. If the event is rescheduled due to pandemic concerns, all registrants will receive a full refund.
Are scholarships available?
Scholarships for the 2022 Summit have all been fulfilled.
Are children allowed in the conference sessions?
**PLEASE NOTE: NO CHILDCARE WILL BE PROVIDED** It is imperative for those attending the Family Meeting to benefit from the important content being presented, and to ensure quality recordings of each presentation by the A/V team. All registrants will have access to a Family Hospitality Room to use during the Family Meeting. Parents/guardians/caregivers are encouraged to utilize the Family Hospitality Room to prevent disruption of presentations during the Family Meeting. Parents who choose to have their children attend the Family Meeting Sessions, are expected to monitor their children's behavior and exit the room as necessary in order to prevent disruption.
What is the COVID-19 Safety Protocol for the event?
KCNQ2 will strictly follow COVID-19 safety procedures as outlined by the Centers for Disease Control and Prevention, the World Health Organization, the Occupational Safety and Health Administration, the State of Colorado, the City of Denver, and any other governing Federal or local government agency. You can find a list of our current safety protocol at COVID tab on this page and we will continue to monitor the situation and adapt our protocol as needed before and during the event.
What is the closest hospital?
Colorado Children's Hospital offers 24 hour ER services.
Colorado Children's Hospital
123 East 16th Ave
Aurora, CO 80045
720-777-1234
Additional questions, not covered here?
Email: scotty@kcnq2cure.org
The health and safety of all attendees at the 2022 KCNQ2 Cure Summit remains our top priority. Between now and the event, we will be closely monitoring over venue’s COVID policies, government mandates and policy changes, Centers for Disease Control and Prevention (CDC) guidelines, and public health advancements. As information pertaining to the virus continues to develop, we will adjust our approach as needed and keep you up to date with new developments to ensure a coordinated effort and a safe environment for all KCNQ2 Cure Summit attendees.
An inherent risk of exposure to COVID-19 exists in any public place where people are present. COVID-19 is an extremely contagious disease that can lead to severe illness and death. According to the CDC, senior citizens and individuals with underlying medical conditions are especially vulnerable. By attending the 2022 KCNQ2 Cure Summit, you voluntarily assume all risks related to exposure to COVID-19 and agree to abide by our COVID policies for the event. Because we serve a vulnerable medical population, in some situations our COVID policies may be more restrictive than local mandates or current guidelines from the CDC. We strongly encourage attendees to be vaccinated and receive their booster shot when applicable before attending the summit. Help us keep each other healthy.
We strongly encourage individuals to be tested for COVID prior to traveling to the KCNQ2 Cure Summit Individuals who test positive should stay home and cancel their registration. Registration fees will be fully refunded. During your attendance at the KCNQ2 Cure Summit in Denver you will be required to support our COVID-19 Safety Measures, and strictly follow our COVID-19 policies and procedures. These COVID-19 policies and procedures may include but are not limited to personal sanitization, mandatory face covering, and social distancing. These policies and procedures may be modified at any time in advance of or during the KCNQ2 Cure Summit.
If the COVID situation dramatically worsens, we may decide to cancel and reschedule the summit on or before October 1st. In the event we need to reschedule, all summit registration fees will be fully refunded. While most airlines have loosened their cancellation or rescheduling policies, be sure to consider the possibility of summit cancellation when making your travel plans.
Please regularly check back here. These policies are subject to change at any time and we will continue to revise our policies as needed to reflect the current state of the pandemic. For questions regarding these policies, please contact us at info@kcnq2cure.org.