KCNT1 Family Conference & Million Dollar Bike Ride
Friday, June 13
Saturday, June 14
Join us in Philadelphia for two days of fun! Friday will include optional clinic appointments followed by a conference where you will hear from speakers and connect with families. Saturday will be our third time participating in the Penn Orphan Disease Center Million Dollar Bike Ride for KCNT1 research!
Register Here
Two Days of Fun!
Friday June 13
Register to attend the Conference in the section below.
Optional: Pre-register for clinic appointments with neurology, genetic counseling and physical therapy. Pre-authorization is required. Begin the process here. Write “KCNT1 Day” in the comments.
Saturday June 14
There are so many ways to participate virtually or in person! Join us in Philly on the lawn to cheer on TEAM KCNT1, sign up to fundraise and ride, participate in the one mile walk or volunteer. Sign up to fundraise virtually to support the team, or host an event in your home town! The event concludes by 4pm. Find more info here.
Conference Agenda
Location: Homewood Suites by Hilton University City Philadelphia, PA
4109 Walnut St, Philadelphia, PA 19104
8:00am – 10:00am Clinic Visits (Optional/CHOP)
9:00 – Welcome from the Foundation (Hotel)
9:20 – 11:30 Speakers TBD
11:45-12:30 Hosted Lunch
12:45 – 4:30 Speakers & Parent Panel Discussion*
6:00 Families Meet for Dinner & Entertainment
*Presentations may include topics such as how to prepare for clinical trials, neurological concerns over time, what symptoms to watch for, how to talk to your health care providers. (We may have presentations from biotech companies on their programs.)
Hotel and Conference Center
We have reserved a small block of rooms at the Homewood Suites by Hilton University City Philadelphia, PA but you must let us know by May 1st to get a discounted rate. Please email MeganW@KCNT1epilepsy.org if you wish to reserve one of the rooms. Scholarships are available to offset your hotel costs.
Families of those receiving care at CHOP can check out the options on their website. AirBNB has options are also available.
In addition, we encourage you to look into your state Medicaid programs to see if they will reimburse for out-of-state medical consultations or education.
Transportation and Parking
Uber offers UberFamily, featuring vehicles with car seats and booster seats for families, as well as wheelchair accessible vehicles (WAV). Visit www.uber.com for more information. Also, visit the CHOP website for more options and important travel tips.
Family Scholarship Application – Due April 25
Thanks to our generous Event Sponsors, we will are offering scholarships to those who require it. Scholarships are for families with a child diagnosed on a genetic report with KCNT1 disorders and have a financial need. Complete our application here.
Please Read our Refund and Conference Policies here
