2017 CRF Day of Hope Family Conference
Thursday, March 30 – Saturday, April 1, 2017
Island Hotel, Newport Beach, California
The innermost expressions of those who attended this year’s CRF Day of Hope family conference were made public in simple declarations hand-written on colorful construction paper circles of pink, purple, blue and green – heartfelt wishes that seemed to soar buoyantly to the left of the lectern where researchers presented their latest findings about the disease:
Thankful for being healthy today.
I’m grateful for all the friends I met here.
My hope is that there will soon be a cure.
These are the familiar words of those whose lives have been touched by cystinosis, but they are also reflective of the hope that comes with new friendships, a growing network of support, and groundbreaking advances in CRF-funded research on the pathology and treatment of the disease.
Recent discoveries are making it more possible than ever for those with cystinosis to enjoy a better quality of life. The sense of community established through the Day of Hope conference has resulted in many lifelong friendships and special bonds, and a greater understanding of the causes of the disease has researchers closer than ever to finding a cure.
Additional CRF research highlights included:
- Advances in delayed-release cysteamine treatments
- The first patient pilot study for allogenic stem cell and gene therapy
- Potential new treatments for corneal cystinosis
- Developments in a transdermal patch for cysteamine
- Ground-breaking bone and muscle studies
Speakers throughout the Day of Hope conference included medical doctors and researchers who presented encouraging findings on the latest treatments, advancements and insights related to the disease.
We are grateful to our Day of Hope Conference Sponsors who helped to make this conference one families from around the world will cherish forever.
This is a time of great excitement and anticipation for the cystinosis community. Researchers from around the world continue to make remarkable progress; their success and new discoveries have brought us closer to finding a cure for cystinosis. CRF’s dedication to funding new research grants twice a year has created a dynamic cycle of research and ensures that donations are always at work. It comforts all of us to know that because we fund researchers in 12 countries there is a researcher or scientist working on cystinosis every minute of the day!
Our conference sessions concentrated on the key areas of cystinosis research – the kidneys, the eyes, muscle wasting, the brain and stem cells and gene therapy. Some of the outstanding researchers, clinicians and scientists who participated in the Day of Hope were, Sergio Catz, PhD, Stéphanie Cherqui, PhD, Paul Grimm, MD, Morgan Fedorchak, PhD, and Robert Mak, MD, PhD.