KCNT1 Family Conference & Clinic Day & Million Dollar Bike Ride

June 7 & 8

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 second time participating in the Penn Orphan Disease Center Million Dollar Bike Ride for KCNT1 research!

Two Days of Fun!

  • Friday June 7

    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. Register to attend the Conference in the section below.

  • Saturday June 8

    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

8:00am - 10:00am Clinic Visits

10:00 - Welcome from the Foundation

10:10- 10:50 Keto Diet and Managing Side Effects - Sarah Tefft

10:50-11:30 Respiratory Health - Joeylynn Coyne

11:45-12:30 Hosted Lunch and Greetings

12:45 - 5:00 Presentations & Parent Panel Discussion*

6:00 Families Meet for Dinner

*Presentations may include topics such as what are the treatments under development, how to prepare for clinical trials, PT/OT therapies, bone health, seizures, and a discussion of families top concerns and desires for a Treatment. (We may have presentations from biotech companies on their programs.)

Hotels

Due to a large banking convention in the City that weekend, many of the hotels closer to the venue are already full and the discount codes are blocked out. We have reserved a small block of rooms at the Doubletree by Hilton Cherry Hill, but are working on finding a closer hotel. (Check back for more info.) Please let us know if you wish to reserve one of the rooms, and for how many nights. The cost for two nights is $474. 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.

Scholarship Application

Thanks to our generous Event Sponsors, we will are offering scholarships to those who require it. Complete our application here.

 

Please Read our Refund and Conference Policies here.

REGISTRATION IS OPEN!