See map of conference event locations.

• Friday, June 26 – Research Roundtable & Welcome Party

  • 1:00–4:00 PM – KDM5C Research Roundtable | Family Data Collection Appointments

  • 5:30–8:30 PM – Community Welcome Party & Dinner at the Ann Arbor Hands-On Museum

• Saturday, June 27 – Full Conference Day

  • 9:00 AM – 4:00 PM – Presentation sessions at Michigan League Ballroom(childcare available starting at 8:45 AM) | Lunch included

  • 5:30–8:30 PM – Community Festival at Ferry Field | Dinner provided

• Sunday, June 28 – Closing Day

  • 9:00 AM – 12:00 PM – Presentation sessions at Michigan League Ballroom (childcare available starting at 8:45 AM)

  • 12:00 PM – Closing Community Luncheon

  Please contact info@kares.foundation with specific conference-related questions. Full detailed agenda can be found here!

We’ve put together a list of recommended hotels offering special group rates for the KARES Family & Science Conference 2026 (June 26–28). All attendees are responsible for booking their own rooms. You’re welcome to arrive early or stay a little longer—just contact the hotel directly to extend your stay at the same rate.

Please book by May 25, 2026 to secure group rates.

📄 View full accommodation details (PDF): KARES Family & Science Conference 2026 – Recommended Accommodations

🧬 Sample Collection at the 2026 KARES Conference 💜

As part of theevent, families will have the opportunity to participate in important research activities taking place onsite in Ann Arbor.

On Friday and Saturday, our partners at CombinedBrain will be collecting blood samples and cheek swabs to support ongoing KDM5C research.

Biological samples are foundational to research. They help scientists better understand how KDM5C-related disorders affect the body at a molecular level — and they are essential to the work being done at institutions like the University of Michigan and Albert Einstein College of Medicine. Without samples from our community, this research simply cannot move forward.

Families who have registered will receive an email prior to the conference asking whether you would like to consent to participate. Participation is always voluntary, and the research team will explain everything during the consent process — with plenty of opportunity to ask questions.

Research activities may include:
• Completing questionnaires or registry enrollment (RARE-X, UMich)
• Providing a blood and urine sample
• Participation in the episignature study at The Hospital for Sick Children

Appointments will be scheduled around the availability you provide. Many families find it helpful to “divide and conquer,” with one caregiver attending research visits while another participates in conference programming.

Every sample strengthens the science and supports the researchers and clinicians working hard on behalf of our community.

Questions? Please reach out to info@kares.foundation.

JUNIOR REGISTRATION IS NOW CLOSED.

KARES is pleased to offer Junior registrations for children attending the Family & Science Conference 2026. Junior registration includes a child’s participation in conference sessions and/or our dedicated childcare program, KARES Camp.

KARES Camp Schedule

• Saturday, June 27: 8:45 AM – 4:15 PM (lunch break 12:15–1:15 PM)

• Sunday, June 28: 8:45 AM – 12:00 PM, followed by our closing community luncheon

The program is open to children ages 1–17 from KDM5C families, including typically developing siblings. KARES Camp attendees must be registered under a Junior registration, regardless of how many hours they attend.

KARES Camp will feature toys, snacks, crafts, music, movement activities, and a movie. An experienced childcare coordinator, Ms. Jazmyne, will be on site, with trained volunteers following secure procedures and emergency protocols. If you have Junior registrants, be sure to watch your email for additional information.

Questions or special requests? Please contact melissa@kares.foundation

Can’t attend in person? You can still join us online! Register to live stream the KARES Family & Science Conference 2026 and receive on-demand video access after the event for $50 USD.

As the conference approaches, you’ll receive a unique Zoom link sent to the email used for registration. All in-person attendees will also receive full virtual and video access.

Register for virtual attendance by June 12!

Questions about virtual access? Contact us at info@kares.foundation.

This conference will allow patients and caregivers to:

o Develop a better understanding of our KDM5C registry and data collection options and why enrollment is so important

o Recognize the critical importance of basic and clinical research in the understanding of KDM5C-related disorders and the development of therapeutics

o Learn about the research funded by the KARES Foundation’s Research Grant Program

o Learn how to manage and treat their own or their loved one’s symptoms

For clinicians and researchers, they will:

o Understand the spectrum of genotypic and phenotypic features of KDM5C-related disorders

o Gain a better understanding of how their patients' symptoms fit into the landscape of KDM5C-related disorders so they can properly support their patients

o Develop a broader understanding of options in treating patients after connecting with other clinicians and sharing experiences

o Learn critical updates from KDM5C researchers, clinicians, and families and innovative ideas to advance research on KDM5C variants

o Gain a deeper appreciation of the importance of their work by listening to the real-life experiences of patients and caregivers

o Learn about the research priorities that KARES is supporting and connect with other researchers working on KDM5C-related research

THE TRAVEL STIPEND APPLICATION IS NOW CLOSED.

The KARES Foundation is pleased to offer a limited number of travel stipends to support KDM5C-affected individuals, families, and researchers who might otherwise be unable to attend the Family & Science Conference.

Stipends may cover conference registration fees, hotel accommodations, and travel expenses. Applications are open to both domestic and international participants. Recipients will be notified in February 2026.

🔗 Travel Stipend Application—this application is now closed.

CANCELLATION POLICY

Cancellations with refunds for conference registration fees will be considered on a case-by-case basis before May 25, 2026. Cancellation requests received after this date are non-refundable. If we need to cancel or reschedule the conference, all conference registration fees will be fully refunded.

We want to be as flexible and understanding as possible, but we also have to fulfill our contract obligations. Refunds will not be provided for conference no-shows who have not gone through the above cancellation process. For questions, email info@kares.foundation.

PRIVACY

Your personal data will be collected to manage your registration and participation in connection with the conference and will be shared with the KARES Foundation and with vendors who are coordinating the logistics for the conference. Your personal information will not be shared in any other way, and the KARES Foundation never sells your data.

PHOTO RELEASE

The KARES Foundation intends to take photographs and videos of the Conference events for use in KARES promotional materials in print, electronic and other media, including the KARES Foundation website, email distribution lists, and social media accounts. By participating in the Conference, you grant the KARES Foundation the right to use any image, photograph, voice, or likeness, without limitation, in its news, promotional materials, and publicity efforts.

CONDUCT

We value the participation of each community member and endeavor to deliver an enjoyable and fulfilling experience. Conference participants are expected to conduct themselves with integrity, courtesy, and respect for others and maintain the highest level of professionalism at all conference programs and events. All attendees, speakers, organizers, volunteers, vendors, and staff at the Conference are required to observe the following Code of Conduct: the KARES Foundation is dedicated to providing a harassment-free conference experience for everyone, regardless of gender, sexual orientation, disability, physical appearance, body size, race, or religion. We do not tolerate harassment of conference participants in any form. All communication should be appropriate for a professional audience, including people of diverse backgrounds and cultures. Be kind to others. Participants violating these rules may be asked to leave the Conference at the sole discretion of the KARES Foundation.

COVID-19

By attending the KARES Family & Science Conference, you voluntarily assume all risks related to exposure to COVID-19. We strongly encourage attendees to be vaccinated and receive their booster shots when applicable before attending the conference.

We also strongly encourage individuals to be tested for COVID-19 before traveling to the conference. Individuals who test positive should stay home and cancel their registration.

For questions regarding these policies, don't hesitate to contact us at info@kares.foundation.