Future by Design

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.

Meet the Future by Design Outreach Team

Todd Bradley

Todd BradleyHi 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.

Yes, having cystinosis sucks but it does define me! It defines me in a good way, as a passionate and compassionate individual, willing to give advice, share experience, laugh or cry, be a friend, or help in any way I can. Please contact to me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 864-313-1440.


Tyler Griffin

Tyler GriffinMy name is Tyler Michael Griffin and I’m 26 with cystinosis. My birthday is August 12th. I was born in Germany on an American military base. I’ve had my ups and downs with cystinosis, but at this point in my life I’m doing well. Overall, cystinosis has made me a stronger person and I would like to help others. My email is This email address is being protected from spambots. You need JavaScript enabled to view it. and my phone number is 585-307-0960.


Jana Healy

Jana HealyMy name is Jana, I am 33 Year old with cystinosis. I was diagnosed at an early age and also have a twin sister, Sara, with it as well. We always had each other to lean on to help us through the tough times and I would love to share that gift with others, know you are not alone and I am here help. I can be contacted by email This email address is being protected from spambots. You need JavaScript enabled to view it..


Sara Healy

Sara HealyMy name is Sara Healy and I'm 33 years old. I went to culinary school, I love to cook and sing. I have lived with cystinosis my whole life. I was basically treated differently by my classmates from Junior High to High School. It was a very emotional time in my life where I felt so out of place and different when all I wanted to do was fit in. One thing I did have was my twin sister Jana. She also has cystinosis so I always had someone to confide in and relate to. It helped me get through that period of my life and keeps me going strong to this day. That’s why I want to do this. I want to help people with rare conditions not feel so alone and to know there will always be someone to turn to when they feel alone. Please contact to me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 701-770-2635.


Eddie Langley

Eddie LangleyHello, my name is Edward C. Langley Jr, (AKA Eddie). I was born on December 9th, 1978 and was the second child born with cystinosis in my family. My sister was born 6 years before me but passed away when she was 10. I have an Associate’s degree in culinary arts and also feel that my life experiences, both positive and negative, provide me with wisdom beyond my years. Many people feel I am a good listener and come to me for advice and compassion. I am willing to discuss anything. I always try to speak the truth and believe that the truth helps us all learn and grow. I promise that I will keep your information private if you want to speak to me about difficult topics. Please email me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Christina Marie

Christina MarieMy name is Christina. I am currently living in South Carolina with my boyfriend Cary and our adorable dog Lola. I am currently attending college about 15 minutes away from my house to study nursing. I am now 29 years old ,when I was diagnosed with cystinosis I was only 18 months old. Since then treatment for cystinosis patients has improved miraculously. When I am not in school I enjoy baking, going to the movies, and watching different shows on Netflix. As a person living with cystinosis I think you can do anything you put your mind to. You can reach me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 703-431-4024.


Melea Martin

Melea MartinI am 35 years old living with cystinosis. I reside in Ohio with my husband Jim and daughter Claire. I went to school and received my Associate’s degree in Early Childhood Education. I love art and photography. I work at a preschool/daycare and enjoy working with young children, exploring and learning new things. Painting with the younger ones (even the one year olds) is one of my favorite activities at work. I love to shop at Target, unique local shops, and any bookstores. You can reach me at 330-766-3048 or This email address is being protected from spambots. You need JavaScript enabled to view it..


Jim Martin

Jim MartinI am 48 years old and married to Melea Martin who has cystinosis. I work at GM and Mindrocket. Born and bred in Ohio. Studied Music at Youngstown State University. My email is This email address is being protected from spambots. You need JavaScript enabled to view it. or call 330-766-3048.


Ashley McLain

Ashley McLainHi, My name is Ashley Jean McLain, I was born and raised in Oregon but I currently live in Buckeye, Arizona. I was diagnosed with cystinosis when I was 6 months old and I am currently 25 years young. And I've been through it all, but it’s made me become who I am today. When I was 15, I started dialysis for 10 months until my amazing mother donated one of her kidneys to me. Due to my own doing, the kidney rejected after 5 1/2 years. In 2013, I went back on dialysis, through 2013-2016 I had so many negative and positive experiences that have shaped who I am today. In 2016, I lost my best friend of 11 years, and that's when I hit rock bottom. Then everything changed for the better. Around the end of October 2017, I moved to Arizona with my parents. I did the workup for transplant and three months later, I received my second kidney transplanted after almost 5 years of being on dialysis. Now just two months later, I am studying at Gateway Community College for my Associates of Applied Science in Respiratory Care with specifics in Neonate and Pediatrics. Through my experiences, I know that I can help other patients who either need help or just want to talk. Email This email address is being protected from spambots. You need JavaScript enabled to view it. or call 971-220-4298.


Katherine Morrison

Katherine MorrisonHello, I’m Katherine and I am 27 years old living with cystinosis. I live in Memphis where life revolves around basketball, barbeque, and music! I previously served on the Cystinosis Research Network board and am very excited to be a part of the Future by Design Outreach Program. My goal is to spread advocacy and awareness for the cystinosis community while also providing resources to all effected by cystinosis. I received my kidney transplant in November of 1999 and life has never been the same. I love that I have the energy to be active and pursue all my goals. I am currently earning my Bachelor's degree in Nutrition and have an Associate's degree in Allied Health with a Pharmacy Technician focus. You can reach me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 901-230-6844.


Katie Swafford

Katie SwaffordHello, 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.

Living with cystinosis has been hard. It has taken many things from me but I am grateful for everything it has taught me. I have recently moved to eastern Oregon where I am doing foster care and enjoying my rural surroundings. If you’d like to talk, I’m available at This email address is being protected from spambots. You need JavaScript enabled to view it. or 971-221-8658.

Favorite quote: "The wound is the place where the light enters you." –Rumi

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