Cystinosis Families Together Again

Thursday, March 30 through Saturday, April 1, 2023

VEA Newport Beach Resort
900 Newport Center Drive
Newport Beach, CA 92660

We are excited to see you and celebrate our cystinosis community at the 2023 Day of Hope family conference. Not only will we renew our friendships, but we will also renew our efforts to work together to support research that will improve the lives of our children and adults with cystinosis.

We have an incredible line-up of presenters who will speak on a range of topics including, stem cell and gene therapy, muscle wasting and myopathy, treatments for corneal cystinosis, kidney disease, neurological issues, bone deformities, and more.  CRF researchers will share their progress and clinicians will discuss current and future treatments. Our outstanding childcare program is open to infants and children up to 12 years of age and we have planned a special outing for our teens!

We are pleased to let you know that a Family Assistance 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.

We encourage you to submit the Family Assistance Form as soon as possible. Please note that the information provided on the form is confidential and will not be shared with anyone other than the CRF family assistance committee and CRF staff.

Join us for a weekend of hope, inspiration, and community.  We look forward to strengthening the bonds that created this remarkable CRF family community. When we are together, magic happens.  We look forward to seeing you in March 2023! 

More Day of Hope Information

The Day of Hope will begin on Thursday evening, March 30, with the Welcome Meeting followed by a Mexican Fiesta Dinner. Conference sessions will begin early Friday morning, March 31, and continue on Saturday, April 1, followed by the family luncheon.

We will be covering several relevant and important areas of cystinosis research and treatment. We will also have breakout sessions that will allow us to discuss life with cystinosis and how we can support and learn from each other. Confirmed speakers include Sergio Catz, PhD, Stéphanie Cherqui, PhD, Morgan DiLeo, PhD, Francesco Emma, MD, Ana Alves Francisco, PhD, Benjamin “Beno” Freedman, PhD, Paul Grimm, MD, Stephen Jenkins, MD, Julian Midgley, MD and Sophie Molholm, PhD. We have so much to share; we hope you will join us to celebrate our research progress and our community!

VEA Newport Beach, A Marriott Resort and Spa
The 2023 Day of Hope Conference will be held at a new venue, the VEA Newport Beach Resort in the heart of the world-class Fashion Island Shopping Center. CRF has secured hotel rooms at a special flat rate of $275* per night for cystinosis families. Rates for other guests are $359 per night for king rooms, and $439 per night for double queen rooms (plus tax and fees). The CRF team will coordinate with the hotel to make your reservation(s). The special rates are only available by requesting accommodations through our dedicated Day of Hope reservation page. 

Registration is Open!
The Day of Hope Conference is only a few months away and will be here before we know it! 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. 

CRF Day of Hope Conference Overview

Thursday afternoon, March 30

3:00 pm – Registration Check-In Opens 
4:00 pm – Welcome and Introductions   
6:00 pm – 9:00 pm Reception & Mexican Fiesta Dinner

Friday, March 31

  • Family Breakfast
  • Children’s Activities
  • Conference Sessions
  • Family Lunch
  • Conference Sessions
  • Dinner Under the Stars

Saturday, April 1

  • Family Breakfast
  • Children’s Activities
  • Conference Sessions
  • Family Lunch

CRF Day of Hope Co-Chairs

We are honored to announce the Day of Hope Conference Co-Chairs:

  • Clay Emerson, PhD, PE, CFM, Hope for Brooke, 
  • Jill Emerson, CPA, Hope for Brooke, CRF Board Member
  • Denice Flerchinger, Tina’s Hope for a Cure, CRF Board Member
  • Stephen Jenkins, MD, Sam’s Hope for a Cure, CRF Board Member
  • Kristen Murray, Seth’s Circle of Hope
  • Nancy Stack, President, CRF Founding Trustee
  • Brian Sturgis, 24 Hours for Hank, CRF Board Member

The Co-Chairs invite you to learn, share, laugh, and celebrate our cystinosis community at the Day of Hope family conference. 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. We eagerly await seeing you and renewing and strengthening the bonds that created this remarkable CRF family community. We look forward to seeing you soon!

If you have questions, please email info@cystinosisresearch.org.

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