"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."


Jean Hotz
Karen Ritchie, U.S.: Many will remember this Cystinosis pioneer, and those who don't, should. When Jean's grandson, Josh, was diagnosed with cystinosis in the early 80's, she saw a great need to bring other families suffering the same disease to come together. Those were the days before the internet, social media, or information on Cystinosis. It was almost impossible for a group so small to raise any meaningful funds. She turned "impossible" into "I'm possible" . There was virtually no treatment and most of us were told our children would die before 10 years, and sadly many did. For this reason, Jean created the first cystinosis support group, The Cystinosis Foundation, established in 1983, from which all other groups came from. But her vision went further...what if we did something that had never been done before....bring patients, families, doctors, researchers, pharma and all interested parties together in one place. In the past researchers stayed in little rooms processing data with patients represented by numbers. She gave a face to this disease, one which would inspire the community to help. She created yearly conferences where we would ALL meet, break bread, share our lives...lifelong bonds were created at those conferences between families, doctors, and all others. In those early days, parents seemed to know more about the disease than the medical community. So for the first 10-20 years, we gave them our children to participate in studies in order to teach them what we needed....blood work, neurology testing, brain scans, bone x-rays, Opthalmology...and just to listen to our concerns. We were taught how to fundraise to help support this much needed research. But she didn't stop there. It wasn't long before we were getting calls from every corner of the world, from international families who also needed help....she never turned away anyone no matter how far away they lived. Although it was not popular, she saw a need and opportunity once again. The Foundation hosted countless conferences outside the US and helped them with moral support as well as financial help to start their own foundations. This woman never slept! She just didn't care about her own grandchild, but all the children and adults. If she knew a child was in the hospital, suddenly a stuffed animal, blanket, flowers, or countless other gifts would arrive at her expense. The Cystinosis community is on the verge of a cure thanks to all the hard work and dedication from everyone in this community. So when you say your prayers tonight, please send one up for Jean Hobbs Hotz, who taught us all that indeed one person can make a difference. One becomes two, becomes ten and becomes this incredible Cystinosis "family". RIP sweet Jean.  

François Couppey, France: Jean have done so much for our community, i remember the first time we met her in Ann Arbor. I remember our first meeting. she was, for the others, so strong, she knew how to reassure us in all circumstances, she knew how to help us to rise up, to be better. The first thing she said to me was, "No, you’re not alone, you’re not alone anymore and we’re going to fight together" . Beside her, I was no longer afraid about what our life could be. She taught me everything, I can never thank her enough for teaching me never to give up. She taught me to be confident about the future, how to stay calm in the storm, as she knew to do it. She also knew how to console us with a smile, a word. I saw her sick, suffering greatly, during one of the conferences, during the breaks, away from the eyes of others, and just few minutes later, displaying to others only smiles and affectionate words, hiding everything from his own suffering. She will remain for me, an example of courage, an admirable woman and a faithful friend. Thank you, dear Jean, for having gone through our lives, I will always love you and we will never forget you. I am, like many, sad to lose you, but I know that, where you are, you will continue to watch over us, to be at our side, to push us to be better, until we have overcome this disease. And on that day, we will celebrate that together, my old friend. But, my dear Jean, how could I be only only the quarter of what you have been to us ? Warm regards to all her family, she will be in our prayers.

Sue Scott, Australia: We have lost a beautiful caring soul. I will always remember how Jean encouraged me to start our Australian cystinosis support group. She often rang at the strangest hours and was horrified that she had woken me at 2 or 3 am hehe she was never good at working out international times. Her love kindness and devotion to anyone that was involved with cystinosis was truely beautiful. And I was always so grateful for the international conferences she helped organise . It wasn’t just the USA that she was interested in. As soon as I informed her of an international conference being held the other side of Australia she jumped straight in and offered to pay for a booth if we could man it so cystinosis info could be spread to this side of the world . I will be eternally grateful for all she did for us .
Sending hugs to all those who’s lives she touched and her family
Xênia Euridice Freitas Mota, Brazil: We met Jean at a conference, day of hope, in 2011. She gave us the strength we needed to go to the united states and be part of the big cystinosis family. From that day on, we had in this warrior, full support to start battling here in Brazil too. A very difficult path, full of stones, but as she told us, we were not alone. On several occasions she guided us by the phone, with her calm voice of someone who was sure that one day the cure would arrive! And it's here, dear Jean! You certainly left with your mission accomplished! She was a pioneer and made everything to happen at the right time! Your legacy will never be forgotten!
The Brazilian Cystinosis Family, the Cystinosis Support Group Northeast Brazil and the Brazilian Association of Cystinosis can only thank you for so much affection and encouragement! You will be an eternal presence! Thank you, dear Jean! Thank you a thousand times! The walk will continue with the same endurance, as Valerie will be at the head of the foundation. To her, too, our gratitude and our sincere condolences.
Mack Maxwell, U.S.: I first met Jean Hotz in the summer of 1999. This was at a Cystinosis Conference in San Diego. I was 35 at the time and had never met another person with Cystinosis. It was one of the most impactful weekends of my life. Jean was so kind and welcoming. This changed my life forever and I began a new phase in my Cystinosis journey that included education, modern treatment, research, and many new life long friends. Her work started in 1983 and impacted many people for years. I’m so glad that Jean lived long enough to see The Cure begin.