Renewing Hope, Rekindling Connections, Realizing a Brighter Tomorrow
Thursday, April 10 through Saturday, April 12, 2025
Hyatt Regency Beach Resort and Spa in Huntington Beach, CA
CRF Day of Hope Family Conference
Day of Hope Information
The Day of Hope conference will begin on Thursday, April 10, with registration and a family Welcome Session followed by a Mexican Fiesta Dinner. Conference sessions will begin Friday morning, April 11, and continue through Saturday, April 12, and conclude with a sunset BBQ dinner on Saturday evening.
CRF-funded researchers Sergio Catz, PhD, and Stéphanie Cherqui, PhD, will present their current research findings and report on the progress of their studies. Paul Grimm, MD, and Stephen Jenkins, MD, will join us to discuss cystinosis treatments, including renal replacement therapy. We have planned multiple breakout sessions that will allow us to discuss life with cystinosis and how we can support and learn from each other. We have so much to share; we hope you will join us to celebrate our research progress and cystinosis community!
Conference Overview
THURSDAY AFTERNOON
Registration Opens at 3:00 p.m.
Welcome Session 4:00 p.m.
Mexican Fiesta Dinner 6:00 p.m.
FRIDAY
Family Breakfast
Children’s Activities
Conference Sessions
Family Lunch
Conference Sessions
Dinner Under the Stars
SATURDAY
Family Breakfast
Children’s Activities
Conference Sessions
Family Lunch
Conference Sessions
Sunset BBQ Family Dinner
Cystinosis Research Foundation
Day of Hope 2025 Co-Chairs
Clay Emerson, PhD, PE, CMF, Hope for Brooke, CRF Board Member
Jill Emerson, CPA, Hope for Brooke, CRF Board Member
Stephen Jenkins, MD, University of Utah Hospital, Sam's Hope for a Cure, CRF Board Member
Kristen Murray, Seth's Circle of Hope, CRF Board Member
Brian Sturgis, 24 Hours for Hank, CRF Board Member
We are excited to learn, share, laugh, and celebrate our cystinosis community at the Day of Hope family conference. We will renew our friendships and our united efforts to support research that will improve the lives of our children and adults with cystinosis.
We look forward to seeing you soon!
Family Assistance Fund
Thank you for your interest in joining us for the 2025 Day of Hope conference. The conference promises to be a weekend of hope and inspiration. We are delighted to let you know that a fund has been created expressly to help families and patients with some of the costs associated with the conference. We want to help everyone who needs assistance; however, we have a limited amount of funds available. We will try our best to help everyone who needs it.
Please register for the conference and then submit your completed assistance fund application form as soon as possible but no later than February 20, 2025. The information provided on the form is confidential and will not be shared with anyone other than the family assistance committee and CRF staff.
Complete the form and email to Jill Emerson, jill.emerson@hotmail.com
Hyatt Regency Huntington Beach Resort and Spa
General Accommodation Information
The 2025 Day of Hope Conference will be held at the Hyatt Regency Huntington Beach Oceanfront Resort and Spa, on the beautiful coastal shores of Huntington Beach. We look forward to welcoming our cystinosis families and encourage you to register as soon as you can to guarantee your attendance and ensure your hotel accommodations.
The Day of Hope Committee has secured a block of rooms at a special discounted rate of $349 per night, plus taxes and fees for all attendees. Cystinosis families, including grandparents, will receive a $125 credit* per night towards their total bill, courtesy of the Day of Hope sponsors. Conference registration is required to secure the discounted rate and will only be applied to bookings utilizing the dedicated Day of Hope lodging link (provided upon successful registration submission). Rates are available for a maximum of four (4) nights. Guests are responsible for all incidentals and parking expenses incurred. Check-in time is 4:00 p.m. and check-out is 11:00 a.m.
There is no charge to attend the conference, and all group meals provided Thursday evening through Saturday evening are included. Childcare and related activities are provided by licensed and bonded sitters for infants and children up to 12 years of age during conference sessions, and are complimentary for all families (pre-registration is required – details are available upon successful registration submission).
*NOTE: The discounted room rate for all attendees is $349.00 plus taxes and fees of $74.29 (for a total nightly rate of $423.29). Cystinosis families and grandparents will receive a $125.00 credit per night courtesy of Day of Hope sponsors (for a nightly rate of $298.28). The credit will be applied by the hotel at the time of departure and will NOT be reflected when booking your room. All room rates quoted exclude room upgrades, incidentals, and parking charges.
