Registration is closed.
Sept 29-30, 2023, Chicago, Illinois
JOIN US!
Join us for KCNQ2 Cure’s 7th Summit on September 29-30, in Chicago, Illinois.
We proudly invite you to the International KCNQ2 Cure Alliance Summit: a weekend of education, connection, and collaborative research.
The objective of this Conference is to combine patient-centered science and real-world strategies for patients and families living with KCNQ2-related disorders.
THANKS TO OUR SPONSORS





Thursday, September 28th
11am - 2pm - Social time for earlier arrivers - location TBD
3pm - 5pm - Registration at the DoubleTree Chicago Magnificent Mile Hotel
6pm - 9pm - Dinner at Timothy O'Toole's - Preregistration required $20/person Register Now!!- everyone welcome
Friday, September 29th
Parent Track - DoubleTree Chicago Magnificent Mile
8am - 12pm - Breakfast, Parent Track, Participate in research, therapies, palliative care, self-care, equipment, and more
12pm - 1pm - Lunch at DoubleTree
Parent and Professional Track - Northwestern
2:30pm - Check-in and social time at Northwestern
3:45pm - 6pm - Presentations - New Age Therapeutics
6:00pm - Dinner at Northwestern
7:30pm - Social time - DoubleTree Hotel
Saturday, September 30th
Separate Parent and Professional Tracks
Parent Track - DoubleTree
7am - 8am - Breakfast
8am - 12pm - Decoding KCNQ2, NAPA Center, Special Needs Trusts, Transitioning to Adulthood, Supporting Siblings, Caregiver Burnout
Professional Track - Northwestern
7am - 8am - Breakfast
8am - 1pm - Pathophysiological Mechanisms, Pathophysiological Mechanisms, and Pharmacology
Lunch Professionals (Northwestern) and Parents (Hotel)
Joint Track
3:15pm - 5pm - KCNQ2 Beyond the Brain
5:30pm - Dinner at DoubleTree Chicago Magnificent Mile
7:30pm - Second City Improve Event - DoubleTree Chicago Magnificent Mile
Sunday, October 1st
9:30am - 12pm - Optional family social event
2023 KCNQ2 Cure Alliance Family and Professional Summit Sponsor Information
Corporate Exhibitor Opportunities - All exhibitor fees are tax-deductible donations
TITLE LEVEL $25,000
- Acknowledgment in select conference materials as Title Level
- Recognition on all conference invitations, media releases, and electronic newsletters
- Corporate logo placed on conference registration website with link to Exhibitor's website
- Visible signage at event with recognition as Title Level
- Naming rights as title sponsor for Family & Professional Dinner
- One (1) exhibitor space
- Conference registration and dinner attendance for five attendees
PLATINUM LEVEL $15,000
- Acknowledgment in select conference materials as Platinum Level
- Recognition on all conference invitations and electronic newsletters
- Corporate logo placed on conference registration website with link to Exhibitor's website
- Visible signage at event with recognition as Platinum Level
- One (1) exhibitor space
- Conference registration and dinner attendance for four attendees
GOLD LEVEL $10,000
- Acknowledgment in select conference materials as Gold Level
- Recognition on all conference invitations and electronic newsletters
- Corporate logo placed on conference registration website with link to Exhibitor's website
- Visible signage at event with recognition as Gold Level
- One (1) exhibitor space
- Conference registration and dinner attendance for three attendees
SILVER LEVEL $5,000
- Acknowledgment in select conference materials as Silver Level
- Recognition on all conference invitations and electronic newsletters
- Corporate logo placed on conference registration website with link to Exhibitor's website
- Visible signage at event with recognition as Silver Level
- One (1) exhibitor space
- Conference registration and dinner attendance for two attendees
BRONZE LEVEL $1,500
- Acknowledgment in select conference materials as Bronze Level
- Recognition on all conference invitations and electronic newsletters
- Corporate logo placed on conference registration website with link to Exhibitor's website
- Visible signage at event with recognition as Bronze Level
- One (1) exhibitor space
- Conference registration and dinner attendance for one attendee
HOTEL AND VENUE INFORMATION
DoubleTree by Hilton Hotel Chicago - Magnificent Mile
300 E. Ohio Street, Chicago, Illinois, 60611, USA
Hotel website
Northwestern University Feinberg School of Medicine
420 E Superior St, Chicago, IL 60611
You can book your room for the $205/night group rate via the link you will receive in your Summit registration confirmation email. Group room rates apply to the September 28-29 dates.
Nearby hotel options:
- Hyatt Centric Chicago Magnificent Mile 633 North St. Clair Chicago, IL 60611
- Warwick Allerton Hotel Chicago 701 N. Michigan Ave. Chicago, IL 60611
- Fairfield Inn and Suites
- Courtyard by Marriot
- Hampton Inn
AIR TRANSPORTATION
Chicago O'Hare International Airport
Visit ORD airport website
This hotel does not provide shuttle service.
Accessibility information and transportation to and from O'Hare
Chicago Midway International Airport
Visit MDW airport website
This hotel does not provide shuttle service.
Accessibility information and transportation to and from Midway
The family scholarship application is closed.
Conference Funding Assistance Opportunities
We are aware that there are costs that families incur when traveling to this event that could impede their participation. To assist you, we have put together a list of Funding Agencies that offer grants to families to defer conference travel expenses.
KCNQ2 CURE ALLIANCE FAMILY CONFERENCE SCHOLARSHIP
Thanks to generous donors, KCNQ2 Cure can offer Summit scholarships to members of KCNQ2 Cure Alliance. Scholarship funds are limited, and awards are in different areas. All scholarship applications must be received by July 1, 2023, to be considered for our 2023 Summit. Scholarship recipients are chosen at the discretion of the KCNQ2 Cure Board. Scholarship recipients will be notified no later than July 15, 2023.
Please contact us at info@kcnq2cure.org if you have any questions.
A. The ARC of the United States. Each chapter offers different programs/services, so 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 that are directly related to developmental disability issues.
Example (is specific to Illinois only): https://www.thearcofil.org/about-us/programs/financial-assistance-for-trainings/
B. The National Council for Developmental Disabilities (CDD) are federally funded, self-governing organizations identifying the most pressing needs of people with developmental disabilities in their state or territory. So this means not every council sets aside money for conference attendance/education in that given state.
- Fact sheet: https://acl.gov/sites/default/files/programs/2022-08/DD_CouncilsInfoSheet_ACL.pdf
- This is the main council page with contact info per state.
- https://nacdd.org/councils/
- The State table below (section III) may have further contact info for your state as well, including the executive director’s email address.
C. The National Association of State Directors (Developmental Disability Services) are present in each State. Some States have funding for family conferences to further education and enlighten those in your community.
- Click on your state, and an information box with details on the State director, email, and website should pop up. https://www.nasddds.org/state-agencies/
- If you have trouble finding information about such funding or grants, you can try and email/call your state director and inquire if they have available grants to help families & individuals with disabilities to attend conferences relating to that disability.
D. NATIONAL ORGANIZATIONS
- Angel’s Hands Foundation: Assistance to attend a national conference with general family scholarships limited to $1000 for eligible expenses.
- The M.O.R.G.A.N Project: provides conference travel and registrations and other non-cash resources to families of children with disabilities to improve their quality of life. This is meant to be a funding of last resort for families.
E. 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 other 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 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 before 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 subsidizing the entire cost. Deadline is a minimum of 90 days before the 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 before 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 funds up to $750 per person for out-of-state conference travel. The deadline is 60 days before 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 training 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 before the event: https://www.tn.gov/cdd/training-and-news/leadership-training-and-development/scholarship-fund.html
F. MEDICAID/WAIVER PROGRAM ENROLLEES
If your child is on Medicaid, especially home and community-based waivers, 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, 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 (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 a KCNQ2-related disorder. KCNQ2-related disorders are a rare and intractable form of epilepsy and/or intellectual disability. It causes frequent, hard-to-control seizures and/or a range of significant physical and cognitive disabilities and risks of early mortality. Details about KCNQ2-related disorders 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 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 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, and social activities for KCNQ2 children, their siblings, and parents.” You might also want to include the event agenda and/or a list of confirmed speakers.
A detailed budget: “Our plane tickets will cost $_____. Taxi fare from the airport (round trip) will be $_____.” Or, “We will drive our 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 the costs of meals that you will have in transit to the conference.
TAXES
Don’t forget that, even if you can’t find a grant to assist you, some of the expenses you incur in traveling to a conference at which medical information is shared are 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.
CALL FOR ABSTRACTS
The 2023 KCNQ2 CURE SUMMIT will bring together researchers, clinicians, and families with the goal of advancing knowledge of KCNQ2 and related neurodevelopmental disorders. For this year’s conference in Chicago, September 27-28, 2023, we invite the submissions of abstracts for presentation at the meeting.
We are happy to announce that there will be cash prizes awarded to the best posters presented at the conference.
Abstracts should report unpublished or recently published research findings or clinical observations. All abstract submissions are eligible for poster presentations at the conference, and some may be selected for short (10-minute) talks.
Abstracts should be prepared in Microsoft Word
- Arial 12 pt font, single-spaced, with 1-inch margins.
- Provide an informative title of 15 words or less
- List all author names with first and last names, degrees, and affiliations
- Followed by the body of the abstract with a maximum of 400 words.
- Underline the presenting author’s name and indicate if they are a trainee (undergraduate, graduate, postdoctoral) using an asterisk.
- Figures and tables are not allowed.
The deadline for submitting abstracts is August 30, 2023.
Submit a single file named LASTName_FIRSTName of the presenting author. If more than one abstract is submitted with the same author name, add a sequential number (e.g., 1, 2, etc.) to the file name.
Abstracts should be submitted as a file attachment by email here.
Provide email addresses for the corresponding and presenting authors.
How often and where is the conference held?
KCNQ2 Cure typically hosts its Family & Professional Conference in person every 12-18 months. The location changes from region to region across the U.S. The location for our 2023 event will be held in Chicago, Illinois. Our last in-person conference was held in 2022 in Denver, Colorado, 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 August 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. Professional registration includes meals and 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 August 30th are refundable, subject to a $50 administrative fee.
Cancellation requests received after August30th, 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?
Information about family travel scholarships can be found here.
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 closest hospital?
Ann and Robert Lurie Children's Hospital offers 24-hour ER services.
Lurie Children's Hospital
225 E. Chicago Avenue
Chicago, IL 60611
Additional questions, not covered here?
Email: scotty@kcnq2cure.org