Keep Rockin’ Cleveland 2024
June 13th-15th
6th Family Educational & Awareness Conference – Cleveland, Ohio
FAQs
Attendees have access to the conference program and agenda as well as other important conference related event information in the app! Download here.
Held in-person for the first time since 2018, our CDKL5 community is thrilled to gather again to gain the tools and knowledge necessary to care for someone with this rare disease. Our community has grown incredibly since our last conference, and we look forward to educating and updating everyone.
The three-day event will begin Thursday evening with a meet-and-greet social as attendees begin to arrive at our venue – the Hilton Akron/Fairlawn in Akron, Ohio.
Friday is a full day of programming. Sessions are specially curated for families and include education related to common caregiving challenges, the latest in CDKL5 clinical care, and updates on the CDKL5 research landscape. Speakers are leading CDKL5 deficiency disorder researchers and clinicians as well as distinguished educators, therapists, and allied health professionals. Friday evening attendees will enjoy a plated dinner reception and we will continue the tradition of showcasing our children in a tribute video.
Saturday will be a partial day of programming including therapies, topic based panels, and living well with CDKL5 discussions. We will make time for attendees to learn more about our organization and possibilities to get involved as well as opportunities for families to gather.
Hilton/DoubleTree Akron/Fairlawn
3180 W Market St, Akron, OH 44333
Phone: 330-867-5000
*Link to register for the $159 (+taxes) negotiated rate is provided in your registration email
Right across from the Summit Mall and close to other local attractions, this Akron, Ohio hotel offers on-site dining options, in-room MP3 compatible radios and spacious guestrooms. Guests at the Hilton Akron/Fairlawn can enjoy starting the day with a workout in the modern fitness center or with a cup of coffee from in-room coffeemakers. The hotel also offers both indoor and outdoor swimming pools as well as award-winning dining at the on-site Beau’s Grille. Cuyahoga National Park, the Blossom Music Center and the Pro Football Hall of Fame are all situated only minutes from the Akron/Fairlawn Hilton. Downtown Cleveland as well as the Rock and Roll Hall of Fame is also within driving distance.
- All rooms include refrigerators
- Will there be a private area to change my child? If you are not staying at the conference hotel, there will be a private area available for changing.
- If members of my family are not attending sessions, what is available for them to do? Sibling activities are being planned for Friday in addition to the local attractions listed above.
Travel By Air:
*airport shuttles are not available
Cleveland-Hopkins International Airport is 29 miles from the venue.
Akron-Canton Regional Airport is 19 miles from the venue.
Travel by Car:
Parking is free at the hotel
EV charging is available
Registration is now CLOSED! It provides you access to all the conference sessions and multiple social and networking receptions starting Thursday evening. Additionally, you will receive log-in credentials to utilize our mobile conference app to help navigate your Keep Rockin’ experience, all meals, and an attendee welcome bag.
- Can I buy extra meal tickets for family members who are not attending sessions? Yes. Children under 18 eat for free. Adult guests/travel companions may dine with us at their own expense, we have meal tickets as a registration option (attendee meals are included with event registration).
- Guest Tribute Reception tickets are also available and must be purchased for children under 18 that do not desire the kids plate option.
- Diagnosed children are our guests at all meals, the Thursday evening Welcome Orientation, and the Friday Tribute Reception.
- My spouse and I are going to take turns caring for our child, can we share a registration entry badge? Yes, however anyone eating meals will require their own meal ticket.
UCB has provided funding for sibling activities. An offsite activity for Friday is being planned for siblings aged 8 and over. We will also have a room where siblings can gather and engage in activities for both days of the conference. All meals will be provided unless your child would prefer a beef, chicken, or vegetarian option at the Tribute Dinner. If the children’s plate is not a desired option please purchase a tribute ticket and select their meal choice. We are still working on this programming so you can expect to receive more details as we near the event.
Daytime sessions are designed for adults, caregivers, and professionals within the CDKL5 deficiency community. The content is fast-paced and may not be appropriate for children under 18 and those with CDD.
Loved ones with CDD and children are welcome at evening social events, but we request that you please consider making a care plan for your child(ren) during sessions so that you and other participants can fully benefit from our speakers.
APPLICATIONS ARE NOW CLOSED
Hope Scholarship – Applications due by April 1st, 2024
To qualify for the scholarship, please complete the application at this link. This form may be completed by any CDKL5 family member or caregiver who wishes to attend the conference and needs financial assistance to do so. There are a limited number of scholarships available, and priority will be given to applicants who have not previously received a Hope Scholarship. Awardees will be determined by the IFCR’s Board of Directors and information provided will be kept in strict confidence. The IFCR will notify you of your application status upon review of all applications and available funds.
Only one submission per family please.
Deadline: April 1, 2024
**Please note that Medicaid waivers often provide support for caregiver education funding for caretakers of children under 18 years of age. Reach out to your case manager for more information on this benefit.
Thank you to our Sponsors!
