Cystinosis Foundation

11/18/2020

"With great love and sadness, the family of Jean Hobbs Hotz shares her passing into eternity on 18 November, 2020. Jean established the Cystinosis Foundation in 1983. She saw suffering and tried to heal it. Her legacy of kindness and unselfishness endures. We are forever grateful to her for sharing her many gifts including great compassion, understanding and peace."

02/23/2019

Jonathan Terry is recognized by Queen Elizabeth II with an appointment to the Most Excellent Order of the British Empire for his work establishing the Cystinosis Foundation of the United Kingdom and for services to people with Cystinosis and their families. These photos show Terry surrounded by his family and with HM Lord-Lieutenant of the Royal County of Berkshire, Mr. James Puxley, who presented the award to Terry on 2 February, 2019. Congratulations Jonathan.

05/19/2018

Deanna Lynn Potts Scholarship provides $1000 annually to assist with the high costs of college. Please submit your application by August 15, 2018 to be eligible for this years award.

Cystinosis Foundation

02/27/2017

Check out the Winter 2016 Cystinosis Foundation Newsletter. Read all about the 9th International Congress held in Valencia, Spain, and if you look real close you might see a picture of a very young Dr. Jerry Schneider in 1985 receiving the very first ever research check from a patient organization, the newly formed Cystinosis Foundation, Inc., and over the next 34 years the Cystinosis Foundation would go on to spawn a dozen or more foundations and support groups throughout the Americas, Europe and one very special support group down under. An article on Fertility research, and one on the meeting in Austria where Support Groups and Specialist discussed how to make bones stronger.

A link to the Newsletter is on our homepage right at the top or click on this direct link.
http://www.cystinosisfoundation.org/Newsletters/CysNewsletterWinter2016.pdf

06/07/2016

Nearly 30 Cystinosis researchers will deliver talks about their field of expertise, not to mention the bit of fun we have planned along the way. Walk Onward with us in Valencia.

06/07/2016

Thank you everyone for registering with us on the conference web site! You still have time to register. There is a lot of excitment about our program in Valencia - Thursday, 30 June and runs through noon on Sunday, 3 July - and the new research developments.

Be sure to pack your swimsuit for a dip in the Mediterranean Sea or hotel pool, so you are well refreshed to listen to the experts.