Exciting News –  Mark your calendars

We have tentatively scheduled the CRF Day of Hope Family Conference for August 26-28, 2021 in Newport Beach, California!

After a long and difficult year navigating the global pandemic, we look forward to a new year and new possibilities. We are excited to announce the CRF Day of Hope 2021 conference. We eagerly await the reunion of cystinosis families and researchers as we celebrate our community and learn more about the research we fund.  The Day of Hope is a weekend of connecting with others in our community, meeting the researchers that are changing lives and spending time together learning from each other and supporting each other. It is a weekend of inspirational stories and people that will connect you to the CRF community and give you hope.   Join us and learn more about how close we are to a cure!  More detailed information to follow in the new year!


 Dear CRF Cystinosis Community and Day of Hope Attendees,
It is with a heavy heart that I write today to let you know that after consultation with medical experts, we have decided to cancel the Day of Hope family conference and the Natalie’s Wish event. As you know, the events are scheduled from April 16 through April 18.

The reason for the cancellation is the threat of the coronavirus. We have a vulnerable population of people and we simply cannot risk anyone’s health by gathering in close quarters for three days and nights.  We have no idea if the virus will subside, peak or get worse by the time of the conference. Since we cannot predict what the status of the virus will be and we have so many people flying in from other countries and states, we must do what is right and safe and cancel both events.

Dr. Paul Grimm weighed in and had this to say about the coronavirus and the conference:

We know there are many children who might be nearly asymptomatic but can infect multiple other people… These are known as super spreaders. So, bringing together children and siblings is very possible to include someone who is actively infected.

The people at the highest risk are the elderly, above age 60, people with lung disease and people with immunosuppression such as kidney transplant patients and even potentially people with chronic kidney failure. Even if the actual patients stay home, if their caregivers come to a large personal meeting and get infected and bring it back to their loved ones who are chronically ill, it could have bad outcomes.

Recommendations by organ transplant groups are that patients who are highly immune suppressed should not be going into the public. More recommendations are coming from academic centers. I think there is substantial risks of having a large group of people in a small environment.

The reality is that everybody is going to be exposed sooner or later it’s just a question of time. However, one of the main reasons that all these organizations are trying to reduce the spread is because we don’t have the reserve in the healthcare system to deal with a whole lot of sick people at one time. If the disease spreads really quickly and then all sorts of people require ICU or ventilators we will run out of nurses and doctors and ventilators. By delaying the spread, hopefully we are delaying and reducing the peak numbers at any one time of people who are needing intensive care. If they going to get sick, but they can get sick later, hopefully the system won’t be overwhelmed.

There is no one more disappointed than us.  We have planned and organized and were ready to greet all of you and celebrate CRF’s huge milestones.  But, circumstances out of our control have caused us to change our plans.

We will cancel all the hotel reservations at the Fashion Island Hotel.  Please cancel your airline tickets as soon as possible.  It is our understanding that many airline carriers are offering full or limited refunds.

We do have a silver lining in all of this…we have already booked the conference for 2021 so mark your calendars for next year, April 15-17, same hotel and venue.  2021 will be an epic year for all of us. 

Until that time when we meet in person, we will keep you apprised of all the research progress and of course, Jordan’s progress as he gets stronger and healthier by the day. We will miss each and every one of you but look forward to celebrating with you in 2021.

If you have any questions, please let me know.

Warm regards,


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