Thursday, March 31, through Saturday, April 2, 2022

Balboa Bay Resort, 1221 W. Coast Highway, Newport Beach, CA

Thank you for your interest in the 2022 Day of Hope conference. The conference promises to be filled with hope and inspiration, where we will renew our friendships and our efforts to work together to support research that will improve the lives of our children and adults with cystinosis.

Conference sessions will include research updates led by CRF-funded researchers and clinicians. Topics include: 
Novel Gel Sphere for Corneal Cystinosis
Stem Cell and Gene Therapy
Kidney Disease and Cystinosis
Muscle Wasting 
Adults and Cystinosis

Information about the Day of Hope Conference is listed below.  Conference speakers and their topic abstracts are available to download.  Following the conference, we will post all available speaker video presentations on the webpage for those who were unable to join us in person.

CRF Day of Hope Conference Overview

Thursday, March 31, 2022

3:00 pm – 8:00 pm Check-In
6:00 pm – 9:00 pm Dinner Reception (Indoor/Outdoor Dining)  

Friday, April 1, 2022

6:30 am –  8:00 am Breakfast – Terrace Outdoor Dining
7:30 am – 12:00 pm Childcare (5-12 years) 
8:00 am – 12:00 pm Morning Conference Sessions
12:00 pm – 1:00 pm
 Lunch – Terrace Outdoor Dining
1:00 pm  –  4:30 pm Childcare Resumes Quarterdeck Room
1:00 pm  –  4:30 pm Afternoon Conference Sessions
6:00 pm –  9:00 pm Family Dinner Outdoor Dining  

Saturday, April 1, 2022

6:30 am –  8:00 am Breakfast – Terrace Outdoor Dining 
7:30 am – 12:15 pm Childcare Quarterdeck Room 
8:00 am – 12:00 pm Morning Conference Sessions
12:15 pm  
 2:00 pm Lunch

Day of Hope Conference Agenda
Conference Presenters with Abstracts PDF

Clinics and Information

We encourage you to download information about each of the clinics represented at the conference and contact the representatives for further information. 

Cure Cystinosis International Registry (CCIR):  Volunteers Needed
Join the 130 families from around the world who and enroll in the patient registry. When you enroll you are helping the research community learn more about cystinosis so they can target research that will lead to better treatments and a cure. Do your part and register today!

Confocal Clinic:  Volunteers Needed for Skin Imaging
Dr. Cherqui is conducting a research study to monitor the natural history of cystinosis and do skin confocal imaging. If you have questions and/or are interested in participating, please contact Imama Ahmed (i1ahmed@health.ucsd.edu) or Anne Sawyers (amsawyers@health.ucsd.edu).

Muscle Wasting:  Volunteers Needed for blood draws, height & weight measurements
Dr. Mak and Dr. Cherqui are conducting a research study to monitor the natural history of cystinosis and to draw blood. If you have any questions and/or are interested in participating, please contact Kristin Zeeb (kzeeb@health.ucsd.edu)  or Anne Sawyers (amsawyers@health.ucsd.edu).

Distal Myopathy and Dysphagia:  Volunteers Needed to sign up (actual trial is in Boston)
 Email Natalie Grant if you would like to participate at ngrant@mgh.harvard.edu