In collaboration with Children’s Hospital of Philadelphia (CHOP) in Philadelphia, PA on May 1-3, 2020
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.
Presentations from KCNQ2 Cure’s 2018 Summit are available at this link.
Registration for the 2020 Summit is now open and will run through March 31, 2020.
The price for registration for the 2020 Summit is $150 for KCNQ2 families for up to 4 participants, $75 for an individual (family) and $200 for professionals and industry. This price includes entry into all sessions Saturday – Sunday, breakfast, and lunch on those days, dinner on Saturday, and our family and professional outing on Friday.
Please note that the hotel room block! The foundation has a handful of rooms reserved which will be on a first come first serve basis. Once you register please email email@example.com to get information on the available rooms.
Cancellation requests must be submitted in writing. Cancellation requests received on or before April 15th are refundable, subject to a $50 administrative fee. Cancellation requests received after April 15th, are nonrefundable. Exceptions may be made for family emergencies and are at the discretion of the foundation. No-shows to the 2020 Family & Professional Conference are not eligible for a refund.
Hotel & Travel Information
The 2020 KCNQ2 Cure Summit will be hosted at the Sheraton Philadelphia University City Hotel.
Sheraton Philadelphia University City Hotel
549 Chestnut Street, Philadelphia, Pennsylvania 19104 USA
Tel: +1 215-387-8000
Hotel website: Sheraton Philadelphia University City Hotel
UPDATE: The discounted room rate for the Summit is no longer available as the room block is full.
Conference Hotel Room Block
$139/$159 USD per night, plus taxes, for one king or two queen beds.
The discounted rate is available for dates May 1-4, 2020
- Check-in time: 4 PM
- Check-out time: 11 AM
- Complimentary Wi-Fi for SPG Members
- Self-parking: $18 USD/day
Travel Distance: Approximately 9 miles
Travel times below are estimates and final travel times are dependent upon traffic
Fee: $32 USD; per cab
Hours: 24 hours
Fee: $20-30 USD; per car
Travel time: 25-35 minutes
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
2020 KCNQ2 Cure tentative agenda
Friday, May 1st, the KCNQ2 Cure Alliance will be offering free tickets and lunch to families and professionals to attend The Franklin Institute. The FI is located 1.5 miles from the Summit hotel. We will be offering transportation to and from The FI departing the Summit hotel at 8:45am. Your admission will be good for the entire day and will allow families/professionals to enjoy the FI before they open their doors to the public at 9:30am.
8:45am-1:30pm Buses to/from Franklin Institute/hotel. Enjoy time exploring the Franklin Institute (a fun and hands-on science museum)
11am-12pm Lunch served at Franklin Institute
1:45pm Last bus to the hotel from Franklin Institute (attendees may stay longer but would need to procure their own transportation)
4:45pm-6:00pm Kickoff: welcome, introductions, and KCNQ2 101 (overview of KCNQ2)
6:00pm-8:00pm Welcome reception and registration (light refreshments and cash bar, dinner on your own at local restaurants.)
7:45am-8:45am Registration and Breakfast (Sponsored by Knopp Biosciences)
8:45am-10:30am Session 1: About KCNQ2 encephalopathy, seizure types and natural history
10:45am-12:25pm Session 2: KCNQ2 genetics, your genetic report and natural history studies
1:35pm-3:35pm Session 3: Clinical trials and Xenon XEN495 program overview
3:50pm-5:00pm Session 4: Research: mouse models and ASO (allele-specific oligonucleotide) update
3:50pm-5:00pm Parent break-out - Small-group breakout discussions about clinical trial with Xenon team and families
6:00pm-7:30pm Reception and Dinner (Sponsored by Xenon Pharmaceuticals)
7:30pm-till Informal gathering and socializing at the hotel
8:45am-10:25am Session 1: Research: Channelopathy-Associated Epilepsy research program, IPS (induced pluripotent stem cells) overview and update, progress with mouse models
10:45am-12:15am Session 2: KCNQ2 functional data, Knopp Biosciences update on KB-3061, precision medicine approaches to KCNQ2
1:15pm-2:25pm Session 3: Parent/Caregiver Focus: puberty in KCNQ2, parent self-care, lifting patients
Dinner on your own at local restaurants. Families usually join together in small groups to enjoy time together and share stories.
Family Scholarship Application
We are excited to announce that KCNQ2 Cure has received funding from Xenon Pharmaceuticals for a scholarship program to assist individuals and/or families to attend the 6th KCNQ2 Cure Family & Professional Summit in Philadelphia, PA. A limited number of scholarships are available.
Scholarship recipients will be determined by the review committee, based on several factors including:
- Financial Need
- Involvement in the KCNQ2 community and with KCNQ2 Cure Alliance
- The essay portion of the application
All information contained within this application will be kept in strict confidence. KCNQ2 Cure will notify you of your application status upon review of all applications and available funds. Only one submission per family is permitted.
Four levels of scholarships are available:
- Up to $200 per person for roundtrip airfare (up to four family members)
- Registration fees covered (up to four family members)
- Registration fees covered (up to four family members)
- Two nights of hotel accommodations at the conference hotel
- Two nights of hotel accommodation at the conference hotel
- Registration fees covered (for up to four family members)
No other travel reimbursement/stipends will be provided
What's not covered in the scholarship:
- airport transfers
- checked bags
- meals not directly associated with the conference
- additional nights at the hotel above the those offered above
- hotel incidentals
Sponsor & Exhibitor Application
Things To Do
2 miles from hotel
235 S 33rd Street
0.3 miles from hotel
2 miles from hotel
Institute of Contemporary Art
0.1 miles from hotel
The Franklin Institute
222 North 20th Street
1.5 miles from hotel
Please Touch Museum
2.2 miles from hotel
Philadelphia Museum of Art
1 mile from hotel
Penn Museum of Archaeology and Anthropology
0.1 miles from hotel
1.6 miles from hotel
0.2 miles from hotel
World Café Live
0.6 miles from hotel
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, Dravet Syndrome Foundation, and FamilieSCN2a 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 Chicago-area families, 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.
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. The deadline for 2016 funding is June 1: 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 a developmental disability. Deadlines are 30 days prior to the conference: http://www.icdd.idaho.gov/resources/funding.html.
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 90 days prior to the conference: http://www.md-council.org/funding/conference-participation-fund/
Nevada: The Governor’s Council on Developmental Disabilities provides grants of up to $750 for individuals and $1000 for families to attend conferences out of state. No deadline provided, so call the contact on the webpage for details on timing: http://www.nevadaddcouncil.org/consumer-leadership-3/
North Carolina: The state’s Jean Wolff-Rossi for Participant Involvement Fund offers up to $800 per person (and up to $1800 per family) for participation in out-of-state conferences. Deadlines for application are 60 days prior to the registration date for an out-of-state event; decisions are made monthly on an ongoing basis: http://nccdd.org/initiatives/conference-funding/rossi-fund.html
North Dakota: The State Council on Developmental Disabilities has a Consumer Leadership Fund that supports family participation in conferences, up to $750 per individual or $1000 per family; they do require that grantees share experiences with the SCDD or other advocacy organizations in the state.
Deadline is 90 days prior to the event: http://www.ndcpd.org/SCDD/pdf/2016/Consumer%20Leadership%20Development%20Fund%202016%20Combined.pdf
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 currently being redesigned. You can check back for updates on the program at http://ocdd.org/index.php/ocdd/getinvolved/24/, 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, but the applicant must show that other funders have been approached with no success. Deadline is 60 days prior to the event: http://dhs.sd.gov/ddc/stipnd.aspx
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 and here for the application link: http://www.tn.gov/cdd/article/education-travel-fund
Utah: has an Empowerment Fund designed to support family attendance at disability-related conferences, but the information has not been updated since 2009. If you wish to pursue this, call first to make sure that the funds are still available and procedures are clear. http://www.utahddcouncil.org/grants/empowerment/index.html
Vermont: The state’s Developmental Disabilities Council provides grants of up to $500 for families of people with disabilities to travel to conferences. Deadline is 30 days prior to the conference: http://www.ddc.vermont.gov/grant-information.
1. Prior to completing an application, contact the organization for which you are planning to apply for support to ensure the program still exists and your request would be eligible.
2. If you are awarded a grant, please send a thank you note to the organization.
3. Complete the necessary paperwork or online forms and submit prior to any published deadline dates.
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 & Professional Conference in [location], [date].
Introduce your child and explain KCNQ2: “My child, _____, is _____ months/years old and has KCNQ2. KCNQ2 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 website: http://www.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. 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 .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.
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 2016 rules: https://www.irs.gov/publications/p502/ar02.html#en_US_2016_publink1000178980. These may change by next year, but it is something to keep on your radar.
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.