Future by Design is a group of adults living with cystinosis who’ve come together to pave a brighter future for the teens and adults touched by our rare disease.
We’ve created this Outreach Program to connect individuals and to build relationships within the cystinosis community. Most importantly, we want you to know – you are not alone.
We are here to help make your cystinosis journey easier. Please take a look at our outreach volunteer bios and contact us today! We can chat through text, email, phone calls, and in-person visits based on what’s best for you.
A sample of the resources available include: tips and video blogs from Todd Bradley and Ashley McClain and access to Child Life Specialist, Amy Black, who can walk you through coping techniques, understanding hospital experiences and general life with a rare disease. Check out our Future by Design video.
We want to be a helpful resource for the cystinosis community. Please feel free to reach out with questions or if you just want someone to talk to.
Hi my name is Todd, I was diagnosed with cystinosis at 11 months. I'm now 31, looking forward to my 32nd birthday, and considering myself lucky to be here. I feel strongly about all who are affected by cystinosis, including those with the disease and their family members. But I have some different viewpoints.
Many of those with cystinosis say "cystinosis doesn't define me" but that really frustrates me! I have found my purpose in life through this disease. I have met great and caring people, found a place where I belong, feel comfortable in a place I can make my mark in the sand. You all have inspired me to be grateful, to have courage and confidence, and to know that I have an army behind me. You give me strength to look forward to the next day.
Hi my name is Jennifer. I'm 28 going to be 29 years old on November 23! I was diagnosed at 13 months with cystinosis. I have had my struggles living with cystinosis, but it’s just that struggles, bumps in the road of life. One thing that bothers me is when people say their children suffer from this disease. I try and remind them we don't suffer, and this isn't like cancer where we are sick 24-7, that us as patients whether we are babies, kids, teens or even adults living with cystinosis, we can live a semi- normal life. Many of us have degrees, work or have worked for some very important people. I'm proud to be a part of this group and community. I have had one kidney transplant, it lasted only 6 months from some complications. I'm currently on dialysis and have been for 5 1/2 years, waiting for my turn on a new kidney.
Hello, I’m Jenn. 33 years old living with my second transplanted kidney. I’m living a happy, healthy adventurous life. Meds can be a struggle but with a cup of coffee in one hand and chocolate in the other, it is doable. Each day with cystinosis can be a struggle in one way or another but I don’t let that impact daily life with family, friends and work.
Hello! I’m Emily, 30 years old with cystinosis. I was born in Brazil and then moved to the United States when I was four. Growing up I was into everything as a kid; rollerblading, skateboarding, and all the fun stuff in the 80’s and 90’s. I remember saving up for a PlayStation and till this day I love playing video games! I had my first kidney transplant at ten years old, and it lasted me 10 years. I kept my summers busy by traveling the world. I got married at 18 and was married for 2 years, I had a miracle baby boy, Elijah, who means the world to me. I am so grateful for everyone in my life. I love getting to know people, joking around, listening to music and just enjoying and grasping everything that life has to offer. I am a kid at heart and love new adventures and love being a mommy! Hit me up anytime, 203-531-1733.
Growing up with cystinosis was not easy. As if dealing with the disease itself was not challenging enough, I also had to cope with the multiple adverse side effects that came along with taking the medications. We all know how terrible the Cystagon was to take.
Hello, my name is Katie Swafford I am 33 living with cystinosis. I was born in and continue to live in the Pacific Northwest. My mom donated a kidney to me in 1999. After high school I attended college to become a Veterinary Technician and have worked in small animal hospitals and volunteered with local animal welfare organizations. My older sister Sarah was also born with cystinosis; she passed away in 2014 at the age of 31. Shortly after, I lost the sight in my right eye.
Favorite quote: "The wound is the place where the light enters you." –Rumi