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.

Outreach volunteers can provide access to cystinosis resources, videos and tips from Todd Bradley, and access to Child Life Specialist, Amy Black, equipped with 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

Aimee Adelmann

aimee adelmannHi, I’m Aimee, I was diagnosed with cystinosis at 14 months and now at 32 I am a thriving, two time kidney transplant recipient. I have been through my ups and downs and spent a lot of my twenties in and out of the hospital. After my second transplant my life changed and I think I became a better person. Today I feel I am where I am supposed to be. I am a career driven individual and have had a successful career in the industry of donation and transplant for almost four years. I am currently the Director of Education and Outreach at Donate Life Northwest with a large portion of focus in living kidney donation and providing better education to patients. When I am not working (which is not very often) I enjoy the outdoors in the Pacific Northwest and volunteer with different organizations including the CRN. My hope is that with the Future by Design Outreach Program we will provide and encourage future generations to succeed in life – whatever that may be. I am happy to talk to anyone, and I am an open book- you can ask me anything. You can reach me on email at: This email address is being protected from spambots. You need JavaScript enabled to view it..


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.


Bill Brink

Bill BrinkMy name is Bill Brink, I live in Union, KY (across the river from Cincinnati, OH). I was diagnosed with cystinosis when I was 4 years old. I am now 40. I had my first transplant when I was 12 years old and the second when I was 28. Prior to the fist transplant I spent 11 months on dialysis. The second transplant was much smoother. Probably because this time I knew I needed it and was ready to be feeling better. One of my best friends donated his kidney to me. That was the best gift ever! Between my first and second kidney transplants I lived a pretty normal life. Graduating from high school going to college and receiving an Associate’s degree in Graphic Design. Life has been good but not without a few bumps in the road here and there. Now that I am 40 I look forward to seeing what the future brings; whether it be a smooth or bumpy road. You can connect with me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 859-743-2075.


Mika Covington

Mika CovingtonI am 27 years old and live with cystinosis. I grew up in Nebraska and six years ago I moved to Iowa to work for President Barack Obama, to attend college at Iowa Western Community College and to get a kidney transplant at the University of Iowa Hospitals and Clinics. I am currently a student at the University of Iowa studying psychology and German. I am also a current member of the Johnson County Democratic Party Central Committee and former Pottawattamie County Democratic Party Affirmative Action Chair. You can reach me at 712-314-8258 or This email address is being protected from spambots. You need JavaScript enabled to view it..


Johnny Davis

Johnny DavisMy name is Johnny Davis. I grew up in Astoria, Oregon, and am currently living in Sequim, Washington. I am 26 years old and was diagnosed with cystinosis when I was two years old. I used to have a feeding tube for a few years when I was younger due to trouble eating. When I was 14 I had a kidney transplant with my mother as the donor. That kidney lasted 10 years until due to my own non-compliance (not taking my medications), my kidney went right back into rejection. I have since been on dialysis for almost 2 years. I am currently working on getting my two-year degree online while I work on getting my second transplant. My hobbies include music, video games, traveling, hanging out with friends and playing foot golf. I really want to be a mentor so I can hopefully help those younger than me not make the same mistakes I made growing up with cystinosis. I want to see the next generation thrive in the areas that I and my fellow patients maybe have not. Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 503-410-8036.


Jenn Gray

Jenn GrayHi 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.

I'm currently trying to get my high school diploma. I was pretty ill from surgeries when I was younger so I had to stop school for a few years. When I'm finished with high school my dream is to become an American Sign Language Interpreter, and maybe a few other things. I enjoy taking photos, baking, cooking and spending time with friends and family in my spare time. I'm here if you just want to talk to someone and if you have any questions I'm not sure on the answer I will find one for you: 989-817-8393 or This email address is being protected from spambots. You need JavaScript enabled to view it..


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.


Emily Mello

Emily MelloHello! 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.


Alison Moreno

Alison MorenoHi! I'm Alison Moreno, married to Ray Moreno Jr. I do not have cystinosis, however Ray does. We met in 2009 on a blind date and got married in 2014. I have a medical background so it was a fairly smooth transition as I have slowly become his main advocate in the medical world (aside from himself). We hope to have children one day but that is not in our immediate future. I would honestly like to be an advocate for anyone who is in need. I think I carry a different perspective than most as I only know about the adulthood experience with cystinosis. We don't let cystinosis run our lives - we continue to follow our dreams regardless. We went to Jamaica for our honeymoon. A concern was: is there medical care if something were to happen? The solution was to get travel insurance that would fly us back to states for any healthcare needs. Ray is a paramedic and is currently enrolled in PA school. There is no dream too big if you're willing to work for it. Not even cystinosis can keep you down. Any parents, significant others, siblings, or folks with the disease are welcome to reach out with any questions or concerns. I may not have all the answers but I can certainly listen and be a friend. Please contact me at (360) 870-2491 or email at This email address is being protected from spambots. You need JavaScript enabled to view it..


Ray Moreno

Ray MorenoGrowing 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.

I have never let my health get in the way of having a fun and fulfilling life. It is easy to let this disease determine how you live your life. I have been successful thus far by taking life one day at a time and not taking anything for granted. Currently I live with my wife, Alison, and our Alaskan Malamute, Jaxon, in Puyallup, Washington. He has enough energy to keep us both on our toes. I was able to earn a Bachelor’s degree, work as an EMT and Paramedic, and even volunteered as a firefighter. I have a goal to get my Master’s and become a PA so that I can help others dealing with chronic disease. In my free time I enjoy spending time with family and friends. I’m a big sports fanatic, so I love anything to do with sports. I follow are the Seattle Mariners, Tacoma Rainiers, Green Bay Packers, and the Duke Blue Devils. Also, I love to watch movies. Some of my favorites are Top Gun, and, anything with Kevin Hart or the Rock. My motto in life was summed up in this quote by Stewart Scott, “You beat a disease by how you live, why you live, and in the manner in which you live.” Please email me at This email address is being protected from spambots. You need JavaScript enabled to view it..


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.


Rebekah Palmer

Rebekah PalmerMy name is Rebekah Palmer and I was diagnosed with cystinosis at 5 years old. In high school I played volleyball along with piano and violin as well as sang in stage productions. I went to college for teaching and while I volunteer tutor teens and adults, I still participate in the arts including the behind the scenes work like reading and writing. I feel community is important for every person’s growth as individuals. Learning is a mutual opportunity and I look forward to lessons mastered with each other. Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Stephanie Sorensen

Stephanie SorensenMy name is Stephanie Sorensen. I have cystinosis and live in northwest Iowa. I am 30 years old. I have two wonderful children, my son is 9 and my daughter is 3. I am a hair stylist/ assistant manager at Cost Cutters. I had a kidney transplant in 2001. I am the oldest of 6 and the only sibling with cystinosis. I want to mentor because when you are young you don’t always understand the illness or how to have a normal life being a kid. I want to help them understand it can be difficult but you can still be a kid. The disease doesn’t have to take over your life. You can live life how you want it to be! You can have a GREAT FUTURE!! Please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. or call me at 712-334-0504.

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